Citation
Direct-to-consumer genetics

Material Information

Title:
Direct-to-consumer genetics media messages and public perceptions
Creator:
Rahm, Alanna Lee Kulchak
Publication Date:
Language:
English
Physical Description:
251 leaves : ; 28 cm

Subjects

Subjects / Keywords:
Genetic screening -- Public opinion -- United States ( lcsh )
Genetic disorders -- Diagnosis -- Public opinion ( lcsh )
Direct-to-consumer medical device advertising -- United States ( lcsh )
Genre:
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Bibliography:
Includes bibliographical references (leaves 228-251).
General Note:
Department of Health and Behavioral Sciences
Statement of Responsibility:
by Alanna Lee Kulchak Rahm.

Record Information

Source Institution:
|University of Colorado Denver
Holding Location:
|Auraria Library
Rights Management:
All applicable rights reserved by the source institution and holding location.
Resource Identifier:
707488914 ( OCLC )
ocn707488914
Classification:
LD1193.L566 2010d R33 ( lcc )

Full Text
DIRECT-TO-CONSUMER GENETICS:
MEDIA MESSAGES AND PUBLIC PERCEPTIONS
by
Alanna Lee Kulchak Rahm
B.S. Colorado State University, 1990
M.S. University of Colorado Health Sciences Center, 1997
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
Health and Behavioral Science
2010


2010 by Alanna Lee Kulchak Rahm
All rights reserved.


This thesis for the Doctor of Philosophy
degree by
Alanna Lee Kulchak Rahm
has been approved
by
James W. Dearing
Heather Spencer Feigelson
Sheana S. Bull
////<£ / Jo/d
ate


Kulchak Rahm, Alanna L. (Ph.D., Health and Behavioral Science)
Direct-to-Consumer Genetics: Media Messages and Public Perceptions
Thesis directed by James W. Dearing
ABSTRACT
Information about genetics and the promise of genomic medicine is
commonplace in the mass media. How the mass media themselves
contribute or not to the persistence of this issue and its perception by the
public is the topic of the present dissertation.
The purpose of this dissertation is to investigate the structural and
individual perspectives on the issue of direct-to-consumer (DTC) genetics,
and assess the degree of correspondence across these perspectives. I
conducted a media analysis to determine how the issue of DTC genetics has
been framed in mass media stories and the salient topics related to the issue.
I conducted focus groups to determine individual knowledge, attitudes and
beliefs about the issue of DTC genetics.
A final sample of 398 mass media stories of DTC genetics from Lexis-
Nexis Academic archives between September 1, 2007 and September 30,
2009 was coded for salience and frames. Fourteen focus groups were
conducted between October, 2009 and March, 2010 with Kaiser Permanente
Colorado members and medical staff. Focus group transcripts were coded
for salience and framing of the issue and compared with the media analysis
results.
Study results found that the issue of DTC genetics was not very
important to focus group participants except as it related to the topic of breast


cancer. Mass media message topics and frames showed differences over
time. Focus group participants were generally negative towards the issue
while the mass media was mostly positive towards DTC genetics. Focus
group participants used some of the many frames to understand the issue
that were utilized by the mass media to package the issue, but participants
mainly framed the issue in terms of prevention and a pandoras box, while the
mass media presented the issue more in terms of progressive and
discrimination frames.
The mass media appears to function as a field of power for the issue of
DTC genetics with the consumers in the middle of the contests. A higher-
level concept of an informed consumer emerged from the focus groups that
appears to provide consumers a degree of power in this battlefield.
This abstract accurately represents this candidates thesis. I
recommend its publication.
Signed]
James W. Dearini


DEDICATION
To my husband, Christopher, my children, Ian and Nathanael, and my
mother, Jana, I could not have made this journey without your love and
support. I love you all and thank you for all the sacrifices and allowances you
made for me to pursue this opportunity.
Most of all, I dedicate this dissertation to my dad, Delbert Kulchak, my
grandfather, Larry Bollinger, and my great-grandfather, John Lappin. You
were my biggest fans and the greatest influences in my life. Our time
together was much too short, but your love and lessons continue to carry me
through the decades without you. I know you are with me and I feel your
pride as I complete this endeavor.


ACKNOWLEDGMENTS
This study was funded by the National Cancer Institute, contract 5U19
CA079689, Increasing the Effectiveness of Cancer Control Interventions
(Edward H. Wagner, MD, MPH, Principal Investigator), which provides
financial support for the HMO Cancer Research Network (CRN). Funding was
provided as part of the CRN Pilot program.
I would also like to acknowledge a number of individuals who have been
integral to the completion of this dissertation. First of all, I would like to thank
my committee members, James W. Dearing, Heather Spencer Feigelson,
Sheana S. Bull, and David P. Tracer. Your guidance and support, along with
your many words of wisdom, have been incredibly valuable throughout this
process. I would also like to acknowledge my cohort members Jennie Hill,
Sarah Brannon, Cristy Geno Rassmussen, Carrie McConnel, and Debbie
Rinehart I cannot imagine a better group of individuals to share this journey
with me.
I also gratefully acknowledge my project staff: Nikki Wagner for teaching me
how to let someone else be the project manager, Quynh Le and Eve
Halterman for assisting in the qualitative coding and conducting of the focus
groups, and Nadine Cornish for leading the African-American focus groups.
Additionally, I thank the members and providers of Kaiser Permanente
Colorado who participated in my focus groups. Because of all of you this
project was successful.
Finally, I would like to acknowledge my Colorado cancer genetic counselor
friends and colleagues. You have been my inspiration and my support long
before I even started this journey. You keep me grounded in the issues
important to the clinical practice of genetic counseling, provide the inspiration
for my research, and are always there to provide feedback from the same
perspective that I take in my research. With your help, I know I can continue
to bring our voice and perspective to research that will make valuable
contributions to the field of genetics and genetic counseling.


TABLE OF CONTENTS
LIST OF FIGURES..................................................xii
LIST OF TABLES..................................................xiii
CHAPTER
1. INTRODUCTION TO THE PROBLEM.................................1
From Social Problem to Public Issue: Genetic Testing...........2
The Clinical Model for Cancer Genetic Testing................7
Mass Media Coverage of Genetics................................9
Benefits of Direct-to-Consumer Advertising..................11
Risks of Direct-to-Consumer Advertising.....................11
Direct-to-Consumer Advertising of Genetic Tests.............12
Direct-to-Consumer Genetic Tests............................13
How These Tests Work........................................16
Benefits of DTC Genetic Tests...............................16
Risks of DTC Genetic Testing................................17
The Issue of DTC Genetics...................................18
Overview of this Dissertation.................................19
2. CRITICAL THEORY AND MEDIA THEORY...............................21
Power and Knowledge...........................................21
Social Space and Symbolic Space...............................23
Power in the Mass Media.......................................29
A Brief History of Media Effects............................30
Agenda Setting..............................................32
Framing.....................................................35
viii


Mass Media Framing of Issues................................38
Research Questions............................................40
3. THE ISSUE OF DIRECT-TO-CONSUMER GENETICS.......................44
Direct-to-Consumer Advertising................................44
The Myriad BRACAnalysis DTC Campaign.......................47
Public Perception of Genetics.................................50
Framing Genetics for the Public.............................50
Framing DTC Genetics........................................53
Media Effects and DTC Advertising of Genetics...............58
Significance of the Current Research..........................63
4. MEDIA ANLYSIS: ISSUE SALIENCE, THE MEDIA AGENDA, AND
ISSUE FRAMING.....................................................65
Media Analysis Methods........................................66
Data Collection of Mass Media Sources:......................66
Data Analysis for Salience and Media Agenda.................71
Data Analysis for Media Framing.............................71
Codebook Development........................................72
Media Analysis Results........................................73
Media Sample Characteristics................................73
Issue Salience and Media Agenda.............................77
Framing the Issue in the Mass Media:........................91
Mass Media as a Field of Power..............................97
Discussion...................................................101
Limitations..................................................106
Chapter Conclusion...........................................108
5. PUBLIC PERCEPTION OF DTC GENETICS:
ISSUE SALIENCE, THE PUBLIC AGENDA, AND FRAMING...................110
Focus Group Methods..........................................111
IX


Research Setting............................................111
Background and Rationale....................................111
Research Design.............................................114
Participant Selection.......................................116
Participant Recruitment.....................................121
Data Analysis of Salience and Public Agenda.................124
Data Analysis for Public Framing of the Issue...............124
Focus Group Results...............................................125
Focus Group Characteristics:................................125
Issue Salience and Public Agenda:...........................133
Issue Framing across Focus Groups...........................138
The Concept of an Informed Consumer.........................152
Discussion....................................................158
Limitations...................................................168
Chapter Conclusion............................................170
6. COMPARISON OF RESULTS AND CONCLUSIONS..........................172
Media Analysis and Focus Group Comparison Results.............174
Correspondence of Issue Salience............................175
Correspondence of Media and Public Agendas..................177
Correspondence of Media and Public Framing..................179
Mass Media as a Field of Power..............................184
Discussion....................................................188
Limitations...................................................193
Theoretical Implications and Conclusions......................195
Future Opportunities........................................197
APPENDIX
A. RECRUITMENT SCREENER....................................200
B. FOCUS GROUP QUESTIONNAIRE...............................207
x


C. FOCUS GROUP GUIDE........................211
D. INFORMED CONSENT DOCUMENTS...............222
BIBLIOGRAPHY.....................................242
xi


LIST OF FIGURES
Figure
2.1 Mass media as a field of power.....................................28
2.2 Three main components of agenda-setting...........................34
2.3 Process model of framing..........................................37
2.4 Hypotheses for research questions 1&2.............................41
2.5 Mass Media as a field of power for DTC genetics...................43
4.1 Distribution of media stories overtime.............................77
4.2 Distribution of main topics in the mass media over time...........85
4.3 Example partial negative valence story text.......................90
4.4 Hypothesized models of media as a field of power..................98
4.5 Revised model of media as the field of power.....................101
5.1 KPCO member perceptions of DTC genetics...........................135
5.2 Components of the informed consumer concept......................154
6.1 DTC genetics topics in the mass media and focus groups............190
6.2 Valence towards DTC genetics in mass media and focus groups.....176
6.3 Framing DTC genetics in the mass media and focus groups .........180
6.4 Framing DTC genetics by study method.............................182
6.5 Mass media as a field of power for the DTC genetics issue........187
6.6 Revised theoretical model of mass media as a field of power......191
xii


LIST OF TABLES
Table
1.1 Select glossary of genetic terms.......................................6
4.1 Types of genetic tests included and excluded from this study...........70
4.2 Distribution of media sources .........................................73
4.3 Utilization of journalistic tools......................................74
4.4 Journalistic tools by media source.....................................76
4.5 Main topics of stories presenting the issue of DTC genetics............79
4.6 Use of journalistic tools by main topic................................87
4.7 Headline and story valence towards DTC genetics........................89
4.8 Media frame codebook ..................................................92
4.9 Primary and secondary mass media framing of DTC genetics...............95
5.1 Member focus group types and eligibility criteria....................117
5.2 Member recruitment by group type.....................................126
5.3 Participating member demographics by group...........................128
5.4 Participating member health and trust in information.................130
5.5 Characteristics of provider participants.............................131
5.6 Mass media sources utilized for DTC genetics information..............133
5.7 Mass media topics related to genetics recalled by participants........134
5.8 Focus group frame codebook...........................................140
xiii


5.9 Framing differences between members and providers.................143
5.10 Framing differences by each focus group type.....................146
5.10 Informed consumer and personal autonomy codes by group...........157
XIV


CHAPTER 1
INTRODUCTION TO THE PROBLEM
It has been said that the completion of the Human Genome Project
(HGP)1 in 2003 has ushered in a genomic era that has been promoted as
having the potential to greatly advance our understanding of genetic
determinants of human disease2 and health (Bonham, Warshauer-Baker, &
Collins, 2005; Liu & Pearson, 2008; Attia et al., 2009). The National Institutes
of Health (NIH) Roadmap, a far-reaching government policy statement, also
seeks to usher in an era of medicine that is predictive, personalized,
preemptive, and participatory (Zerhouni, 2006). Genetics is an integral part of
that roadmap. Ongoing research in molecular genetics holds unprecedented
opportunities to discover genes associated with preventable diseases and to
create tests that individuals may use to modify behaviors, make lifestyle
changes, and adhere to screening guidelines in order to reduce risks
associated with those diseases (McBride et al., 2008; Marteau & Lerman,
2001). Current genetic research also offers the ability to understand
individual differences based on genetic susceptibility or responsiveness in
order to optimally prescribe medications (President's Council of Advisors on
1 The Human Genome Project (HGP) was an international research effort to sequence the entire human
genome and produce a map of all its genes. The project formally began in 1990 and was planned to
take 15 years. Rapid technological advances accelerated the timeline and the working blueprint was
completed in April, 2003 (see: http://www.oml.gov/sci/techresources/Human Genome/home.shtml)
2 Genetic determinants of Mendelian diseases (diseases due to a mutation in a single gene and follow
the classic inheritance laws of Gregor Mendel) or genetic determinants of diseases caused by other
chromosomal abnormalities (such as Down Syndrome) are well understood. The new genomic era
addresses the role of genetics in risk for common diseases such as diabetes, heart disease, or stroke that
are due to a complex interaction of genetic risk and environmental exposure (Attia et al., 2009).
1


Science and Technology, 2008; Scott, 2007). Due to rapid discoveries linking
genes with complex diseases or phenotypic characteristics,3 news stories
about new genetic tests and genetic discoveries saturate the mass media
(Murphy & Maynard, 2000; Liu & Pearson, 2008; Pennisi, 2007). It is argued
that the availability of such tests calls for the integration of genetic principles
into every field of medicine, especially into the field of primary care (Taylor,
Edwards, & Ku, 2006; Chung, 2007), as the incorporation of genomic tests
and therapeutics into routine care are increasingly suggested in clinical
guidelines (Feero, Guttmacher, & Collins, 2010). The technology is here and
improving rapidly. Many discussions on the wise use of this technology are
necessary to keep up with the technological advances, and facilitate clinical
utility (Ely, 2009; Hamburg & Collins, 2010; Veenstra, Roth, Garrison, Jr.,
Ramsey, & Burke, 2010).
From Social Problem to Public Issue: Genetic Testing
A major benefit of genetic testing in this new genomic era is the
promise of personalized medicine,4 broadly defined as the tailoring of
prevention, diagnosis, and treatment to the individual patient through genetics
(President's Council of Advisors on Science and Technology, 2008; Scott,
2007; Feero et al., 2010). Personalized medicine is not only beneficial from a
provider perspective of improved patient care and disease prevention, but
from the policy perspective as well. For patients, new genomic-based tests
3 Most current discoveries reported are the result of genomewide association studies, which survey the
human genome for variability associated with complex diseases, such as type 2 diabetes, or phenotypic
traits, such as eye color(Hardy & Singleton, 2009)
4 The term personalized medicine has multiple meanings. The most basic definition applies strictly
to pharmacogenomics (the tailoring of drugs to specific genetic profile) (Langreth & Waldholz, 1999)
or it can mean the tailoring of treatment, screening, and prevention recommendations to genetic profile
(Feero et al., 2010). The latter is the definition utilized for this dissertation.
2


could help tailor preventive recommendations (such as preventive
therapeutics and some screening tests), drugs for disease treatment, or drug
dosages to patient genetic profiles(President's Council of Advisors on Science
and Technology, 2008; Scott, 2007). In 2008, the Presidents Council of
Advisors on Science and Technology (PCAST) issued a report describing the
benefits of personalized medicine from the policy perspective (President's
Council of Advisors on Science and Technology, 2008). The promise from
this vantage point is that these types of genetic tests will help control rising
health care costs through the ability to offer treatment and prevention to those
who will benefit; while sparing those who will not benefit both the side effects
and the expense (President's Council of Advisors on Science and
Technology, 2008). The ability to classify individuals into subpopulations by
genetic susceptibility to a specific disease or treatment could also facilitate
the development of new treatment, diagnostic, and prevention strategies by
more effectively targeting clinical trials to the correct subpopulation most likely
to show the desired effect (President's Council of Advisors on Science and
Technology, 2008).
However, genetic research and testing as a cornerstone of
personalized medicine is recognized as controversial by many (Vogelaar,
2007; Khoury, Gwinn, Burke, Bowen, & Zimmern, 2007; McBride et al., 2008).
The most commonly cited problem with this type of genetic testing relates to
potential insurance and/or employment discrimination based on genetic test
results (Murphy & Maynard, 2000). To study these issues related to genetics
and genomics, the Secretarys Advisory Committee on Genetics, Health and
Society (SACGHS) was established in 2002 by the federal government to
advise the Secretary of Health and Human Services. The committee listed
access to genetic testing through reimbursement and passage of federal
3


genetic non-discrimination legislation as its highest priorities5 (SACGHS,
2004). On May 21, 2008, the Genetic Information Non-Discrimination Act
(GINA) was signed into law by President Bush
(http://www.qenome.gov/24519851) to protect against genetic discrimination
in health insurance and employment.6
Through the continued development of new genetic technologies to
advance the promise of personalized medicine, it appears the human genome
has its own intrinsic value and has become a commodity with the ability to
guide market forces (Rajendran, 2001; Zola, 1986). The increasing media
coverage of genetic advances encourages these market forces through
excessive optimism regarding clinical and corporate benefit from the
technology (Liu & Pearson, 2008), even though it is still too early for most of
these newly developed tests to provide stable estimates of genetic risk of
disease (Kraft & Hunter, 2009; Yang et al., 2009; Venter, 2010) and
regardless of the fact that for many diseases there is no proven therapeutic
intervention for prevention (Ely, 2009), and therefore, very little evidence of
clinical utility (Evans, Dale, & Fomous, 2010). Policy recommendations add
to this optimism by supporting the development of genetic technology, such
as personalized medicine products, in order to improve the quality of patient
care, expedite clinical trials, and control health care costs (President's Council
of Advisors on Science and Technology, 2008). However, risk for most
common diseases is a complex mix of both genetic and environmental
factors, and providers and consumers need to have realistic expectations of
5 All information and documents from the SACGHS can be found at
http://oba.od.nih.gov/SACGHS/sacghs documents.html#GHSDOC 004
6 GINA was signed into law on May 21, 2008, however, sections pertaining to health coverage do not
take effect until between 5/22/09 and 5/21/10. Employment sections will be effective as of 11/21/09.
More information on GINA may be found at http://genome.gov/PolicvEthics/. The law has several
limitations, as it does not cover life insurance, disability insurance, or long term care insurance.
4


the clinical utility of genetic tests (Senter & Chun 2008; Chung, 2007;
Hirschhorn, 2009). Because of the high degree of uncertainty about genetic
test results, many people believe that the power to analyze and interpret
these tests resides only in the hands of those in the medical community with
advanced genetics training (medical geneticists and genetic counselors).
Numerous professional societies have sent out their own call to arms to their
members reminding them to assert their power and call for regulations and to
force public policy legislation of these tests (Gray & Olopade, 2003; Gollust,
Hull, &Wilfond, 2002).
For most people, however, including clinicians, the genome era has
not arrived (Chapman, 2008). Table 1.1 presents a glossary of select terms
associated with genetics that will be utilized throughout this dissertation and
demonstrates the complexity of the field.
5


Table 1.1 Select glossary of genetic terms
Gent> r \ ..... ,
The basic unit of heredity in all living organisms.



Genoub 1. . /*.
the entire collection of genetic material (or genes) of an organism.
Gmw&t, ^ VC- V* r *V' ,* V -- V i
The study of inherited traits, variability, and the mechanism of transmission through
inheritance in which the role of individual genes or chromosomes is apparent.
Vgt
- i< *
* >(> r 7 ' Ci
Genomics V*
the study of the functions and interactions of genes within the whole genome.
A -* r

The Human Genome Project --r
An international research effort to sequence the entire human genome and produce a map
of all its genes. The working blueprint was completed in April, 2003.______________________
Unfair treatment of individuals due to differences in their DNA that may increase their risk
for certain diseases. For example, an insurer denying coverage to a woman with an
increased risk of getting breast cancer due to the results of a genetic test.__________________
A research study that evaluates the association of genetic variation with outcomes or traits
of interest, usually by examining hundreds of thousands of markers across the genome.

Mutations in genes that can be passed on to subsequent generations. In order for a
mutation to be passed, it must be present in all cells of the individual, including the egg and
sperm cells, which are how it will pass to the next generation.__________________________
Polymorphism
A specific change in DNA found in >1% of the general population.

? -
< *

Mutation
A rare variant in a gene, occuring in <1% of the population.
ipaawMj
Specific mutation in a gene known to cause disease or be associated with highly increased
risk for disease. In the case of BRCA1/2, a deleterious mutation indicates that the patient
has a mutation that is known to increase the risk of breast and ovarian cancer
6


Studies show that most primary care and other physicians who do not
specialize in genetics lack the knowledge of clinical genetics to provide
sufficient genetic counseling required to help patients make informed
decisions about testing, including insufficient knowledge of the availability of
testing and management options (Mouchawar, Klein, & Mullineaux, 2001;
Matloff & Caplan, 2008; Wideroff et al., 2003; Taylor et al., 2006). In a survey
of 2250 healthcare providers, only 13 percent of internists, 21 percent of
OB/GYNs, and 40 percent of oncologists could correctly answer four
knowledge questions about breast cancer genetics and testing for the BRCA
genes. Results also indicate that this lack of knowledge did not hinder many
providers from discussing testing with patients or ordering the test (Doksum,
Bernhardt, & Holtzman, 2003). Similarly, another web-based survey of 1251
physicians (821 primary care, 431 subspecialists) found that only slightly over
one-third of the overall sample of physicians were aware that BRCA
mutations could be inherited from the fathers lineage, and that mutations in
BRCA genes occur in <10% of all breast cancer patients (37.5% and 33.8%
respectively). Specialists such as OB/GYN physicians, oncologists, and
general surgeons were significantly more likely to respond correctly to the
questions about BRCA genes than were family practice physicians (Wideroff
et al., 2005).
The Clinical Model for Cancer Genetic Testing
In the mid-1990s, germline mutations in the BRCA1 and BRCA2
(BRCA1/2) genes were found to be associated with an increased risk for
breast and ovarian cancers and that this risk was inherited (Miki et al., 1994;
Wooster et al., 1995). The clinical model for genetic testing for hereditary
cancer risk involves pre-test risk assessment and genetic counseling and
7


post-test delivery and interpretation of results with a genetic counselor or
other genetics professional per recommendations of the American College of
Medical Genetics (ACMG), the American Society of Clinical Oncology
(ASCO) and US Preventive Services Task Force (USPSTF) (ASCO, 2003;
USPSTF, 2005; American College of Medicine Genetics Board of Directors,
2004).
Pre and post-test genetic counseling are important to the clinical model
for cancer genetic testing, as literature indicates that genetic counseling
increases patient knowledge and decreases patient anxiety about BRCA1/2,
and decreases cancer risk perception (Lerman et al., 1997; Calzone et al.,
2005; Pieterse, Ausems, Van Dulmen, Beemer, & Bensing, 2005; Meiser et
al., 2001; USPSTF, 2005). Pre and post-test genetic counseling is also
crucial in helping patients understand breast and ovarian cancer risk, and
helps illustrate the complex interaction between genetics and environmental
factors inherent in all testing for genetic risk. While about 1 in 8 women in the
U.S. population will get breast cancer (about 13% population risk), only about
5-10% of all breast cancers are due to an inherited predisposition, and less
than 1% of the general population is likely to have an alteration in BRCA1/2
(William-Jones, 2006; Antoniou, Gayther, Stratton, Ponder, & Easton, 2000;
Narod, 2002; Petrucelli, Daly, & Feldman, 2010). A deleterious mutation in
BRCA1/2 carries a 50-85% lifetime risk of breast cancer for the individual,
and a 15-30% lifetime risk for ovarian cancer (Ford, Easton, Bishop, Narod, &
Goldgar, 1994; King, Marks, & Mandell, 2003). Therefore, a deleterious
mutation in BRCA1/2 does not diagnose cancer; it only indicates that the
person is at greatly increased risk (compared to the general population) to
develop breast or ovarian cancer. Adding to the complexity of this test is that
a result that is negative for a mutation in the B RCA 1/2 genes does not mean
the individual will not develop breast or ovarian cancer (Liu & Pearson, 2008),
8


and is even less informative in the absence of family history of cancer.
Therefore, the test does not carry much clinical utility for cancer risk
evaluation unless properly utilized and interpreted. Even then, the value is
uncertain depending on the individual being tested.
It has been argued that another purpose of the current clinical model of
BRCA1/2 testing is to limit access to the genetic test to only appropriate
individuals (USPSTF, 2005; William-Jones, 2006). While this may seem
paternalistic, restricting access should function to protect patients against
potential emotional and psychological harm, and keep BRCA1/2 testing cost-
effective for insurers by providing information only to patients for whom it is
clinically useful (William-Jones, 2006). To illustrate this, of the 5-10 percent
of women who may have a hereditary predisposition to breast or ovarian
cancer (and may therefore benefit from testing), BRCA1/2 mutations will only
account for about 17-25% of those women (Frank et al., 2002; William-Jones,
2006; Szabo & King, 1997; Shih et al., 2002). This is because of the complex
relationships between genes, environment, and disease risk, as well as the
current limitations of scientific knowledge of genetics, as most predisposing
genetic factors remain unknown.
Mass Media Coverage of Genetics
Mass media is an important source of health information (Clarke & Van
Amerom G., 2008) and media reports have the ability to impact public
behavior (National Cancer Institute, 2008). When Katie Couric hosted The
Today Show, she promoted colorectal cancer screening and underwent a
colonoscopy on air. Research at the time showed a significant increase in the
number of colonoscopies performed in the months following the show,
9


including a significant increase in the number of women having the procedure
(Cram et al., 2003).
There are more opportunities than ever for the public to find
information about health care products and services outside of the traditional
medical setting through television, print media, and the internet (Gollust et al.,
2002; Wasson, Cook, & Helzlsouer, 2006). While the appropriateness of
Direct-to-Consumer (PTC)7 advertising of medical technology and products is
a controversial issue worldwide (William-Jones, 2006), advertising of
pharmaceuticals has continued for over three decades (Huang, 2000). In the
US, television viewers see as many as 16 hours of prescription drug ads
yearly (Frosch, Krueger, Hornik, Cronholm, & Barg, 2007); making DTC
advertising a multi-billion dollar industry as consumers respond to the
advertising (Gollust et al., 2002; William-Jones, 2006). It has been calculated
that the pharmaceutical industry recoups over $4 in revenues for every dollar
spent on DTC advertising (Brody, 2008), and in 2000, out of the top 10 most
heavily marketed pharmaceuticals, four were the top-selling drugs (Gollust et
al., 2002). The pharmaceutical industry also vigorously defends its right to
advertise (Brody, 2008) in the guise of health education (Schillinger & Dohan,
2008), based on the premise that information empowers patients (William-
Jones, 2006). There are benefits as well as risks to providing health
education to the general public through mainstream media and DTC
advertisements, as this is a main source of health information when
individuals lack direct experience with a health condition or procedure.
7 The distinction is made here and throughout this dissertation specifically for DTC advertising and
DTC genetic testing. It is recognized that most advertising is directed at consumers; however, until
recently genetic tests were not available except through a clinician, nor were these tests specifically
marketed to consumers. The addition of the DTC term is critical in defining the genetic technology
and its marketing referred to in this dissertation from genetic technology that is currently part of
standard clinical practice.
10


Benefits of Direct-to-Consumer Advertising
Health education, including market-driven DTC advertising, has been
shown to increase health literacy, improve health information seeking
behavior, and increase requests for treatment of under-treated health
conditions (Schillinger & Dohan, 2008; Liu & Pearson, 2008; Gellad & Lyles,
2007). Increased patient requests for screening or other preventive care and
increases in patient activation regarding health concerns and seeking of
health care services have also been attributed to DTC advertising (Schillinger
& Dohan, 2008; Murray, Lo, Pollack, Donelan, & Lee, 2004). Additional
educational value may exist in alerting patients to the availability of disease
treatments, encouraging patients to seek advice for untreated conditions, and
even reminding patients to adhere to currently prescribed medications
(Gollust et al., 2002). Proponents assert that DTC advertising encourages
patients to talk with their doctors, possibly increasing participation in the
physician-patient relationship (William-Jones, 2006).
Risks of Direct-to-Consumer Advertising
Potential harms of DTC advertising have been addressed by
physicians and policy-makers (Gollust et al., 2002). The risks of DTC
advertising include inaccurate understanding of drug effectiveness and
appropriateness, tension to the physician-patient relationship, and overuse of
medications (Gollust et al., 2002; Schillinger & Dohan, 2008; William-Jones,
2006). DTC advertisements may also fail to disclose important risks or
limitations of drugs, since the ultimate purpose is marketing and increased
sales, not education (Brody, 2008). For the healthcare system, DTC
advertising may increase overall costs by pressuring insurance plans to cover
more costly brand name drugs when less expensive, equally effective
treatments are available (Frosch et al., 2007; Stange, 2007b; William-Jones,
11


2006). Patient safety may also be compromised, as the newest and most
expensive drugs are the most heavily advertised, regardless of whether the
drug has been in use long enough to truly determine the adverse effects
profile (Brody, 2008).
Direct-to-Consumer Advertising of Genetic Tests
The promotion of genetic tests represents a new era in DTC
advertising. The recent DTC advertising of the genetic test for the genes
implicated in hereditary breast and ovarian cancer has been highly
controversial because of issues around the monopoly of the testing company
and because of the precedent it may set in the rapidly expanding environment
of private companies developing genetic tests to be delivered directly to the
public (Matloff & Caplan, 2008). The discovery of the BRCA1 and BRCA2
genes was the result of a large international research collaboration (Matloff &
Caplan, 2008), but exclusive patent rights were granted to Myriad Genetics,
Inc., a privately owned biotechnology company in Salt Lake City, Utah
(Matloff & Caplan, 2008; Sevilla et al., 2003), that is now advertising the test,
BRACAnalysis, directly to consumers. The scope of the patent is broad and
covers genetic testing for mutations within the two genes and any new drugs
developed targeted towards the genes (Matloff & Caplan, 2008). The patent
means that only Myriad can provide full sequence clinical testing for
BRCA1/28.
8 Concerns about the monopoly on BRCA1/2 testing include worry that additional clinical use of the
test and scientific collaborations are hindered by the patent (Sevilla et al., 2003; Matthijs, 2006).
Opposition to Myriads control of BRCA1/2 testing (Matloff & Caplan, 2008; William-Jones, 2006)
led to the 2004 revocation of Myriads European patent on BRCA1 testing (Zielinski, 2004). In May,
2009, the American Civil Liberties Union (ACLU) sued Myriad Genetics and other associates (Cook-
Deegan et al., 2010). The landmark ruling on March 29, 2010 was handed down to invalidate many of
Myriads BRCA1/2 patents (Matloff & Brierley, 2010). Myriad is confident the patents will be upheld
by the court of appeals (http:/, investor.mvriad.com/releasedetail.cfm?ReleaseID=455348 accessed
10/9/2010).
12


Federal oversight of prescription drug advertising is very limited
(William-Jones, 2006), and genetic testing advertisements are subject to even
less oversight than their pharmaceutical counterparts (Matloff & Caplan,
2008; Gray & Olopade, 2003; William-Jones, 2006). Additionally, Myriads
DTC advertising of BRACAnalysis has been called morally suspect (Matloff
& Caplan, 2008) due to the patent issues and because it widely advertises a
genetic test that does not provide additional risk information for the majority of
the population (Matloff & Caplan, 2008; Gray & Olopade, 2003; Myers et al.,
2006). The campaign appears counter to the clinical and professional society
recommendations to offer testing only to people with specific high-risk family
history; thereby possibly exacerbating the drawbacks to DTC advertising of
other genetic tests (Schillinger & Dohan, 2008).
Direct-to-Consumer Genetic Tests
DTC genetic tests are a niche market that continues to be mined by
corporations looking to capitalize on advances from the Human Genome
Project. Instead of testing for a single gene mutation or trait (as in traditional
clinical genetic testing), these tests provide information on a large number of
traits across the genome (Gurwitz & Bregman-Eschet, 2009). As of March
2008, over 30 companies offered DTC genetic testing via the internet for both
health and non-health (i.e. genealogy profiling) applications (Chapman, 2008;
Goddard et al., 2009a; Goddard et al., 2009b)9.
9See Liu (2008) and Goddard (2009) for tables of DTC genetic testing company websites and types of
tests. The most updated list is maintained by the Genetics and Public Policy Center at Johns Hopkins.
This list was last updated on 5/28/2010 (accessed 9/17/2010) and can be accessed at
http://www.dnapo1icv.org resources/AlphabetizedDTCGeneticTestingCompanies.pdf. This is a
volatile industry, with the likelihood that more companies and/or tests have been added since these
tables and lists were created. There may also be companies listed on the tables that are no longer in
existence or no longer offering the tests originally cited.
13


In November 2007, the companies 23andMe (Mountain View, CA) and
Decode Genetics (Reykjavik, Iceland) made available detailed personalized
genomic profile testing directly to the public (Lee & Crawley, 2009). A third
company, Navigenics (Foster City, CA) began similar services in April 2008,
and included access to genetic counselors (Gosline, 2008; Hunter, Khoury, &
Drazen, 2008; Wade, 2007; Baertlein, 2007; Ewing Duncan, 2007). These
advances brought detailed personalized genomic medicine within reach for
those willing to pay $1000 $2500 (Wade, 2007; Baertlein, 2007; Ewing
Duncan, 2007). Further, in late 2008, 23andMe lowered the cost of their
genomic scan to $399, and earned Time Magazines Invention of the Year
designation (Hamilton, 2008). While none of these companies have mounted
DTC marketing campaigns on the order of Myriads BRACAnalysis
campaign, the companies and their services are covered heavily in the media.
In general, health-related DTC genetic tests fall into three categories: tests
for specific diseases or conditions (like BRCA1/2), tests for polymorphisms
found in the general population that may increase risk of common diseases
(such as heart disease or diabetes), and other health related tests or
nutrigenomic tests (to provide nutritional profiles and guidelines) (Wasson,
2008)10. These tests only determine if risk is increased when a certain gene
or polymorphism is present, they do not diagnose disease nor even indicate
the individual will definitely manifest the disease. This complexity has
prompted many professional societies and government agencies to issue
consumer warnings (Wasson, 2008; American College of Medicine Genetics
10 DTC tests of the type that test for population risk of disease, such as those offered by the specific
companies mentioned later are the focus of this dissertation. Increasingly, these tests may be referred
to as personal genomic service (Gurwitz & Bregman-Eschet, 2009; Brand, 2009). While I am
discussing the era of personal genomics, this dissertation focuses on the DTC aspect of the advertising
and the tests themselves. Therefore, as with the advertising, these tests will be referred to throughout
this dissertation as DTC genetic tests for consistency, but it is purely the authors preference in
terminology. These tests also often include markers for non-health related information such as
ancestry, ear wax type, etc.
14


Board of Directors, 2004; USPSTF, 2005; William-Jones, 2006; Kutz, 2006;
National Society of Genetic Counselors, 2007) and promote the idea that, like
clinical genetic testing, DTC predictive testing requires careful interpretation
and explanation by qualified health professionals (Wasson, 2008).
In a New York Times interview, one geneticist condensed the concerns
around DTC genetic testing by stating that with a few exceptions, these
companies are only promoting what he called recreational genomics since
many of the tests have very little clinical utility at the moment (Wade, 2009).
In other recent literature (Varmus, 2010; Gurwitz & Bregman-Eschet, 2009;
Brand, 2009), these DTC genetic tests have increasingly been called
personal genomics services. Arguments against increasing regulation
include that these tests are intended for informational purposes only (Howard
& Borry, 2009; Evans et at., 2010). The contradiction is that "personalized
medicine is about making informed health decisions, and the companies
claim the information from these genetic tests is empowering and allow
individuals to take charge of their own health (Hsu, Mountain, Wojcicki, &
Avey, 2009; McGuire & Burke, 2008; Evans et al., 2010). Of additional
concern is that if these tests are increasingly offered in both clinical and DTC
settings, consumers may regard these tests as standard practice (Ohata,
Tsuchiya, Watanabe, Sumida, & Takada, 2009). Such controversy prompted
the US Food and Drug Administration (FDA) to send letters in mid-2010 to
several DTC testing companies informing them that the tests are considered
medical devices which require FDA approval. The FDA has not blocked
sales, and the letters do nothing to ensure test quality nor does it place them
securely within the current regulatory scheme (Javitt, 2010).
15


How DTC Genetic Tests Work
Most of these tests for disease association examine Single Nucleotide
Polymorphisms (SNPs-pronounced snips),11 which are single-base pair
changes that are present in a large percentage of the population (Attia et al.,
2009). These changes, or genetic variants, do not cause disease; rather their
presence can suggest increased disease risk (they function as a marker for
increased risk). The variants examined by these tests were identified through
genome-wide association studies (GWAS) for common diseases. Lifetime
and age-specific risks based on the SNP profile are then reported (Yang et
al., 2009). As new GWAS results surface, additional information may be
added to the tests. For example, when association came out between a
marker and the metablolism of a suicide prevention drug, it was added to the
panel of one company within two weeks (Evans et al., 2010). Anyone
interested in these tests can send in a saliva sample or buccal (cheek cells)
swab to a laboratory offering the service and have results sent directly back
without the intervention of a healthcare provider (Chapman, 2008). With the
test results, individuals are provided a report of their susceptibility to a wide
range of common diseases, and may be offered information and advice for
improving their overall health (Chapman, 2008).
Benefits of DTC Genetic Tests
Proponents of DTC testing state that DTC testing allows for individuals
to take responsibility for their future health, and that testing provides
knowledge that empowers individuals to make informed decisions and
change behaviors to prevent disease (McGregor, 2008; Howard & Borry,
'1 While most companies scan a small portion of the genome using these SNPs, one company,
Knome (Cambridge, MA) began offering full genome sequencing directly to consumers for $24,500 in
June, 2009 (www.knome.com).
16


2009; MacDonald & Walton, 2009; Hsu et al., 2009). Test results from DTC
genetic tests may also prompt individuals to seek more information and
preventive screening from doctors (Shim, Cappella, & Lerman, 2007), or to
increase motivation to make behavioral/lifestyle changes (Marteau & Lerman,
2001) to prevent disease or catch a disease at an early and treatable stage
through screening. Examples of individuals taking these preventive steps,
including the director of the National Institutes of Health (NIH), have already
been reported (Dolgin, 2010; Wadman, 2010). It is also argued that DTC
genetic tests may increase public awareness of genetics and increase access
to tests (Hudson, Javitt, Burke, & Byers, 2007), which is typically underutilized
by many at-risk individuals (Mouchawar et al., 2005a) and individuals from
racial/ethnic minority populations (Hughes et al., 1997). Similarly, individual
autonomy is highly valued in the current culture, and the right to know about
personal genetic makeup stems from this underlying principle (Wasson,
2008); thus encouraging individuals to take advantage of this right by
assuming control of their genetic information through the information provided
by DTC genetic tests. Further arguments look to DTC genetic testing as a
means of avoiding genetic discrimination through anonymous testing that
delivers information directly into the consumers hands instead of having it in
the insurance, employment, or medical record (Wasson, 2008).
Risks of DTC Genetic Testing
The main arguments against DTC genetic testing involve the limited
clinical validity and reliability of tests and the unvalidated links between
diseases and genes (Wasson, 2008; Gurwitz & Bregman-Eschet, 2009;
Collins, 2010; Annes, Giovanni, & Murray, 2010; Yang et al., 2009). Similar
to pharmaceutical DTC arguments, over exaggeration of benefits of testing
and inaccurate or downplaying of test limitations is also a serious concern for
17


DTC genetic tests (Chapman, 2008; Howard & Borry, 2009; Evans et al.,
2010). This increases the risk that individuals may make decisions about
health or have surgeries based on unreliable information (Wasson, 2008;
McGuire & Burke, 2008), or increase the burden on the healthcare system
because physicians would feel obligated to order screening and follow-up
testing based on DTC test results (McGuire & Burke, 2008; Annes et al.,
2010).
Some companies do offer customers access to genetic counselors per
guidelines for clinical genetic testing (American College of Medicine Genetics
Board of Directors, 2004; USPSTF, 2005). However, critics of DTC testing
worry that consumers will take results to their primary care providers, many of
whom do not have the knowledge to understand or explain the results
(Wasson, 2008; Taylor et al., 2006). By offering tests directly to the
consumer based on basic research results, the traditional trajectory of
research dissemination from basic research to clinical trial to consumer is
disrupted (McGowan & Fishman, 2008). By removing the healthcare provider
from the equation, the traditional power held by doctors and other health
professionals is reduced, and trust in the medical establishment in general
may be undermined.
The Issue of DTC Genetics
In order to proceed with this dissertation, the complexities of the
current genome era, media messages about new genetic discoveries, DTC
advertising of genetic tests, and other issues related to DTC genetic tests
discussed above must be distilled into a definition for use throughout this
dissertation. Therefore, the issue of DTC genetics as defined in this
dissertation encompasses the companies which advertise and/or sell genetic
18


tests directly to consumers, the risks and benefits of genetic testing that is
advertised directly to consumers, purchased directly by consumers or through
consumer-initiated requests, and provides test results directly to the
consumer without the intervention of a qualified health care professional. The
issue of DTC genetics also encompasses the broader topics around genetic
testing for common disease risk, such as legislation and new
disease/condition-related genes discovered, as disease risk information is a
part of information offered by these tests, and whether these tests provide
medical information or not is at the heart of the debate regarding DTC
genetics.
Overview of this Dissertation
In the following chapters I present the theories and background
research that help me to examine the issue of DTC genetics. In Chapter 2,1
explore the theoretical background for the research and list the research
questions that I answer in this study. I use critical theory to explain power
and knowledge related to the issue of DTC genetics and mass media
coverage of the issue. Critical theory helps to interpret how individuals in the
public as well as the media (as individual journalists as well as institutions)
perceive and interpret issues. I then further interpret this issue through media
effects theories of agenda-setting and framing.
In Chapter 3, I review the background literature about media effects
and genetics. Research around the DTC advertising of BRACAnalysis is
reviewed first, followed by research on public perception of genetics and how
the issue of genetics has been framed for the public by the media in the past
and how DTC genetic tests are currently framed. Finally, I review the effects
19


of media coverage about the issue of DTC genetics on subsequent public
perception.
As I have two distinct data collection methods, media analysis and
focus group research, the research study design and methods presentations
are split into the initial sections of Chapters 4 and 5. I also embed in each
chapter the results, discussion, and limitations of the corresponding data
collection method.
In Chapter 6 I put it all together by comparing and contrasting the
results from chapters 4 and 5 and by tying these results back to the
theoretical ideas presented in chapter 2. Finally, summary conclusions and
suggestions for future study conclude Chapter 6 and the dissertation.
20


CHAPTER 2
CRITICAL THEORY AND MEDIA THEORY
The interactions of system structures (such as government policies
which shape the social world) with institutional agents (including mass media,
healthcare organizations, and the genetic technology industry), and individual
agents (journalists, healthcare practitioners, and individuals in the general
public), can be examined as a competition for power and knowledge. These
interactions involve the gaining and imparting of knowledge and the
assumptions of institutional and individual agents in the system that contribute
to how knowledge is presented, interpreted, and utilized. Critical theory offers
a lens through which to study the meanings and importance of a social
problem, such as DTC genetics, through the use of several concepts,
beginning with power and knowledge.
Power and Knowledge
In order examine the manifestation of power, Michel Foucault provides
elements that serve as a starting point for power, knowledge, discourse, and
subjectivity. Power carries a negative connotation of domination and
subjugation, but Foucault suggests it can have a productive and positive
connotation as well (Motion & Leitch, 2007; Foucault, 1980). Power offers
benefit to society and individuals because it forms knowledge (e.g. medical
knowledge or genetic information in this case) and produces discourse (a way
of imparting knowledge and exercising power through various forms of
21


communication, such as the mass media) (Foucault, 1980). Further, Foucault
challenges the adage that knowledge is power and suggests that power and
knowledge are integrated and inseparable:
The exercise of power perpetually creates knowledge and,
conversely, knowledge constantly induces effects of power....
Knowledge and power are integrated with one another,
and there is no point in dreaming of a time when knowledge will
cease to depend on power....It is not possible for power to be
exercised without knowledge, it is not possible for knowledge
not to engender power. (Foucault, 1980 p.52)
For Foucault, knowledge is both the creation of power as well as the
creator of it, just as power is both a creation and a creator of knowledge. This
relationship between power and knowledge is further clarified with the
addition of strategy. Individuals and organizations utilize multiple strategies in
the form of discourse to conform with, challenge, or circumvent existing power
relationships (Motion & Leitch, 2007). Foucault proposed that public
discourses, such as discussions within the mass media, are an institutionally
sanctioned system of statements and expressions, which then exercise power
by defining objects of knowledge (in this case, genetics) (Martenson, 2007).
Therefore, the language utilized by the mass media to discuss genetics, or to
impart genetic knowledge upon the public, is one such strategy: and the
control of the language used by the mass media is the vehicle through which
power is exercised in the discourse. However, since power is relational, there
is always resistance (Motion & Leitch, 2007), or an alternative viewpoint. In
this case, the alternative viewpoint, or alternate discourse, might be the
discourse presented by the medical field or genetics professionals.
Additionally, individual agents within the system and those who are recipients
of the systems discourse maintain the ability to choose to accept or reject the
positions offered within the discourse (Motion & Leitch, 2007). In other words,
22


audience members are not passive recipients of discourse, rather each
individual decides whether to accept or reject the position offered by the mass
media.
Discourse
Foucault describes discourse as a way of representing the knowledge
about a particular topic at a particular historical moment (Greenway, Dieppe,
Entwistle, & Meulen, 2008). Discourse strategies or messages are utilized to
influence the dissemination of ideas into practice which can regulate the
conduct of individuals or be used to meet the objectives of an institution or
organization (Greenway et al., 2008). Dominant discourses are those
discourses which influence people to speak, act, or think in certain ways so
that the status quo is maintained (Foucault, 1980). Sometimes the dominant
discourse is seen as too powerful to be challenged, or it may be so deeply
internalized within the structure that it is not seen at all. In these cases, the
ability for individuals to position themselves differently within the discourse, to
resist the discourse, or to have influence within the discourse may be limited
(Alex & Hammarstrom, 2008).
Social Space and Symbolic Space
Like Foucault, Pierre Bourdieu also wrote that structure and agency
are dependent upon historical, social, and cultural contexts (Alex &
Hammarstrom, 2008). Bourdieus theory seeks to overcome the opposition
between objectivism and subjectivism, and instead focus on the relationship
between the objective structures and the subjective phenomena (Bourdieu,
1989; Ritzer, 1992). In other words, objective structures are the structures
which exist in the social world and influence agents, but the agents within the
23


social world subjectively perceive and construct meaning around these
structures. In fact, in a lecture delivered at the University of California, San
Diego in 1986, Bourdieu stated that The major contribution of what must
rightly be called the structuralist revolution consists in having applied to the
social world the relational mode of thinking (Bourdieu, 1989), or observing
and constructing the structures of the social world at a specific historical
moment through the subjective perception of the agents within the structure at
that time (Ritzer, 1992).
For Bourdieu, social space consists of the objective structures that
exist independently of the conscious will of its agents, but which guide and
constrain their practices, and is made up of the symbolic systems of language
and myths (Bourdieu, 1989). The social space is constructed from both
habitus, the perception, thoughts, and actions of individuals, and fields or the
objective structures that exist in the world. Habitus and field are relational, in
that field conditions habitus, but habitus gives meaning to the fields (Ritzer,
1992).
Habitus
Habitus refers to the way in which individuals perceive, understand and
evaluate the social world around them. This internalization of social
structures reflects divisions such as social classes, age groups, or gender
groups, such that those who occupy a similar position within the social world
tend to have similar habitus or tastes(Ritzer, 1992; Bourdieu, 1998b).
Habitus also provides the ability to differentiate self from others, in that it
implies ones place in the world and it also implies the place of others
(Bourdieu, 1998a). A stereotype, a schemata, or the process of acculturation
all serve as examples of this differentiation. Therefore, within the social
space, habitus is both a system of individual practices, and a system of
24


individual perception or appreciation of those practices (Bourdieu, 1998b). In
his own words, Bourdieu sums up habitus saying, through habitus, we have
a world of common sense, a world that seems self-evident (Bourdieu,
1998b).
Field
Bourdieus term field, is often reduced to stand for social structures or
social class (Bourdieu, 1989), but while a useful starting point, it is much
more12. Field is a relational term, as well as a structural one (Ritzer, 1992).
There are as many fields in the social world as there are areas of human
activity (literary, artistic, religious, scientific, journalistic, etc.) (Neveu, 2007),
and they all employ various kinds of capital, such as economic and/or social
capital (Ritzer, 1992). Fields are also a place of opposition, where
competition and social divisions exist between agents rich in one type of
capital over another (Neveu, 2007; Veenstra, 2007), and position within the
field is determined by the distribution of that capital (Bouman, 2007). Fields
are also the site of struggle through which individuals attempt to maintain or
alter the distribution of the field-specific forms of capital (Bouman, 2007).
Knowledge capital, in the form of genetic testing, has previously belonged
only to healthcare providers specially trained in genetics. As genetic testing
becomes available to the general public directly, the position of providers
within the field as the sole purveyors of this knowledge is altered and the
individual is provided direct access to this capital (Majdik, 2009).
12 Reducing the definition of field to social class is too close to structural determinism. Bourdieu
continually (and painstakingly) differentiates his theory from that of pure structuralism. Field and
habitus are homologous, such that each practice (or taste) within a field is a product of the habitus
within the larger social and cultural context, while habitus provides the general logic of the practice
within the field (Lo & Stacey, 2008).
25


Social space, therefore, is a symbolic space of status groups
characterized by different lifestyles. These different lifestyles are manifest by
occupation, voting preference, cultural tastes, and lifestyle practices
(Veenstra, 2007). Lifestyle practices refer to the practices generally engaged
in by different groups such as typically engaging in golf and chess versus pool
and poker. Objectively, this space is socially structured and highlights the
unequal properties of agents or institutions within the space. Subjectively, it
is structured by internalized perceptions and appreciations of the individuals
within groups that express the relational state of symbolic power (Bourdieu,
1989). Within social space, habitus is the sum of the learned and internalized
behaviors, knowledge, and attitudes that allow individuals to belong to a
specific field (Bouman, 2007), it may also exclude them from other fields. The
structure of social space inhabited by the mass media is different from the
social space inhabited by the audience members, and different audience
members are subject to their own internalized experiences and perceptions
relative to other audience members and the journalists producing the media
messages.
Field of Power
The field of power is itself a field unlike other fields. It is not a
population, such as the ruling class, nor is it a specific area of human activity,
such as art or literature; rather it is an intermediary field in which other
societal fields are nested (Koller, 2007).
It is a space of play and competition in which the social
agents and institutions which all possess the determinant
quantity of specific capital...to occupy dominant positions within
their respective fields...confront one another in strategies aimed
at preserving or transforming this balance of forces. (Bourdieu
& Wacquant, 1992) p 76)
26


In a sense, it is the issue over which competition between the agents in
possession of the capital associated with the issue rally to maintain or
overthrow the dominant discourse in the field. For the issue of DTC genetics,
the struggle on the field of power is the struggle for the knowledge imparted
by genetic testing. Competition on the field of power can take the form of
either physical struggle (war or competition) or symbolic confrontation (debate
through words and symbolic language), with the public sphere consisting of
all performances and symbolic confrontations taking place in public (Koller,
2007). Within the public sphere, any actor, agent, or institution may initiate
the discourse, because the sphere relies on the principles of freedom of
speech, of the press, and of association (Koller, 2007). For the issue of DTC
genetics, the mass media serves to function as the field of power. The
struggle on the mass medias field of power is the struggle for the knowledge
imparted by genetic test results. Now that genetic risks for common diseases
can be determined, does this information remain with the genetic
professionals, or does this capital belong to the individual? The DTC genetic
testing companies and the medical establishment, as well as policy makers,
are utilizing the media as the battlefield for a symbolic confrontation on this
issue and who has the agency to make judgments about the use of this
information (Majdik, 2009).
27


FIELD OF POWER
MASS MEDIA
Figure 2.1 Mass media as a field of power
28
FIELD OF POWER


Symbolic Power
Social classes and social groups that exist in the structure of the social
world may not have the symbolic capital to be recognized as a cohesive
group with power to participate on the field of power. In order to obtain this
power, the group must be legitimized by those with the power to legitimize or
officially nominate them (Bourdieu, 1989). Symbolic power is the power of
world-making, or the power to reveal things that are already there (Bourdieu,
1989). The struggle for symbolic power is also not coercive power, but rather
a competition of attention versus non-attention (Koller, 2007) within the
discourse taking place on the field of power. When a group or an issue is
granted attention by the media, it is legitimized and gains symbolic power to
participate on the field of power. Likewise, a group may be formed and vocal
to support or oppose an issue, but if they do not have the symbolic capital to
gain the attention of the media, they will not have a voice in the discourse to
influence other agents on the field of power.
Power in the Mass Media
In the struggle for symbolic power, many stakeholders attempt to
occupy dominant positions, as this empowers them to control who enters the
field of power, or who can play the game, and who cannot (Koller, 2007).
Both Foucault and Bourdieu bring up the importance of discourse as the
vehicle by which system structures exercise power in this struggle.
Foucualts work provides a toolbox for public relations to construct and
transform societal discourses and practice (Motion & Leitch, 2007), while
Bourdieu provides a theoretical background from which to understand
audience behavior resulting from reception of media messages as well as the
influence of the external social world on the producers of the media
29


messages (e.g. journalists) (Neveu, 2007), whether or not these producers
are conscious of their intent (Gamson, 1992).
Because individuals and different groups inhabit different social
spaces, they may react differently to the same communication. Likewise,
institutions and individuals within a system will strive to influence
communication in order to maintain the dominant discourse, or their symbolic
power. Communication as a broad term involves encoding, transmitting,
reception and synthesis of information and the construction of meaning
(Finnegan & Viswanath, 2002) within the social space. The mass media
systems are seen by many as the communication mechanism that provides
the link between the public and the policy makers (Rogers & Dearing, 2000).
Taken to another level, Gamson (Gamson, 1992) observed that every
policy issue has a public discourse connected with it through which the public
constructs meaning. Mass media is one forum where this public discourse
takes place, thereby giving media the dual role as both the producers of the
public discourse and serving as the field of power in which social reality is
defined (Gamson, 1992).
A Brief History of Media Effects
Media effects are the outcomes of the dissemination of ideas, images,
themes and stories through the mass media (Finnegan & Viswanath, 2002).
The content of such effects can take the form of education, entertainment, or
advertisements, and is found in websites, books, magazines, movies,
television, email, and newspapers. The study of media effects however, has
been skewed toward those mass media with the broadest reach: Radio,
cinema, and newspapers beginning in the 1920s, wartime propaganda
through leaflets and film shorts beginning in the 1930s, and television
beginning in the 1950s. Media effects research looks at both the impact of
30


mass media exposure on knowledge, attitudes, or behaviors in individuals or
groups of listeners, readers, or viewers, and less often, the effects which flow
from the audience to the media. For example, in the uses and gratifications
media effects paradigm most often associated with the sociologists Elihu Katz
and Jay Blumler, people are active participants with media, picking and
choosing to what they will attend to so that they may satisfy specific needs or
wants such as leisure, escapism, instruction, or education (Finnegan &
Viswanath, 2002). Research on media effects can be conducted at the level
of the individual, groups, communities, or the larger social system(Finnegan &
Viswanath, 2002). On the individual level, behaviors, knowledge, or attitudes
(in any order) resulting from exposure to certain media messages can be
studied (Finnegan & Viswanath, 2002). On a grander scale, communities and
social systems can serve as the level of analysis to examine the effect of
media messages on social change (Finnegan & Viswanath, 2002).
However, the entire early study of mass communication was based on
the premise that the media have significant and unidirectional effects on the
audience (McQuail, 2000). Concerns over the ubiquity and potential power
wielded by the mass media have been raised consistently and with the same
arguments, nearly since the advent of the newspaper. In 1948, when
mainstream media consisted only of newspapers and radio, Lazarsfeld and
Merton wrote that it was widely felt that the mass media comprise a powerful
instrument which may be used for good or ill and that, in the absence of
adequate controls, the latter possibility is on the whole more likely.
(Lazarsfeld & Merton, 1948) p 95). This concern is based on valid
observations over time that mass medias function in society is to exercise
their own symbolic power and thus keep the general public conformed to the
status quo, and bestow prestige to individuals, groups, or issues by
legitimizing their status (Lazarsfeld & Merton, 1948).
31


Early research into mass communication, however, rarely
demonstrated any direct effects on individuals of exposure to mass media
content (Rogers & Dearing, 2000). Media scholars were left to conclude in
the 1960s that if there were strong effects of mass media, they could not find
them. This acknowledgement gave rise to alternative research paradigms
that sought evidence of indirect media effects: Cognition, not attitude and
behavior outcomes. The two most prominent indirect effects paradigms are
agenda-setting theory, and framing theory.
Agenda Setting
While initially conceived as an effect of mass media attention to the
issues of the day in shaping public perceptions of issue importance
(McCombs, 2004; McCombs & Shaw, 1972), the theory of agenda-setting has
broadened to include effects on the mass media and effects on the policy
agenda in the construction of social reality. This agenda-setting process is
defined as an ongoing competition among issue proponents to gain the
attention of media professionals, the public, and policy elites (Dearing &
Rogers, 1996). The agenda-setting function of the media derives from
Laswells notion that media plays a critical role in directing the publics
attention to certain issues (Dearing & Rogers, 1996)13, a perspective, in turn,
that was based on Walter Lippmanns (1922) insights about the power of
newspapers to direct readers attention to some issues, and consequently not
to other issues (Lippmann, 1922). Research shows that individuals construct
a worldview or social reality based on their personal experiences, interaction
13 The capacity of the mass media for agenda-setting implies a causal connection or direct effect of a
media message on the perceptions of issue importance(Cook et al., 1983). These direct effects have
sometimes been found (example: Cook et al., 1983), but agenda-setting research is also important from
the point that it can shed light on the indirect effects of media on individual knowledge and public
agenda-setting(Rogers & Dearing, 2000). This is not a study of direct effects of media; therefore this
section is devoted to the indirect effects of agenda-setting which will be studied in this proposal.
32


with other people, and mediated images from the mass and specialty media,
and that the overwhelming proportion of ones worldview is shaped through
media representations when direct experience with the issue is lacking
(Scheufele, 1999). The way individuals respond to media messages can be
categorized into different types of information seekers: 1) Active processors
who seek information assuming that media presentation is slanted, 2)
selective scanners who seek only media that is relevant to them; skimming or
ignoring irrelevant media stories, and 3) reflective integrators who think about
information derived from the media and may discuss with others to gain
alternative perspectives (Scheufele, 1999).
Individuals therefore construct an understanding of issues by relying
on the symbols available to them, such that the media discourse is only one
resource in addition to experiential knowledge and popular wisdom (or their
symbolic space) (Pan & Kosicki, 2001). Cohen (1963) reconciled the
differences in individual responses to media by noting that the media does not
always succeed at telling people what to think (that is, change their attitude
towards an issue), but the media is incredibly successful at telling people
what issues to think about (Cohen, 1963).
33


Source: Rogers & Dearing (1988)
Figure 2.2 Three main components of agenda-setting
Salience
The key construct in agenda-setting theory is salience. The salience of
an issue is defined as the degree to which an issue on the agenda is
perceived as relatively important (Dearing & Rogers, 1996). Salience of an
issue on the media agenda is the manifestation of the media telling people
what issues to think about. On the field of power, the media may be able to
increase the salience of an issue on the public agenda through control of
information presented to the public. This can be achieved through
legitimization of sources and the ability of the media to convince the public
that the issue is socially relevant. This control of information is itself a
manifestation of power (Dearing & Rogers, 1996), however, the ability to
increase salience on the public agenda is also dependent upon how the
34


individuals in the public process the information controlled by the media
based on their own habitus and social space.
Framing
To frame has been defined as to take some aspect of perceived
reality and make them more salient in a communicating text, in such a way as
to promote a particular problem definition, causal interpretation, moral
evaluation, and/or treatment recommendation (Entman, 1993)p 52). In other
words, a frame is the central organizing principle that holds together and
gives coherence to a diverse array of symbols or idea elements" (Gamson,
2001) page x)14. While agenda-setting concerns the salience of an issue,
framing concerns the way in which the issue is communicated to the public.
The way an issue is framed is also dependent upon who is doing the
framing (Murphy & Maynard, 2000). News media organize events and issues
as packages to relay to audiences (Scheufele, 1999; Gamson & Modigliani,
1989; Semetko & Valkenburg, 2000; Pan & Kosicki, 1993). The media frame
is also shaped by their own habitus, or the unconscious internalization of their
training (Neveu, 2007) (see also Bourdieu On Television 1998 for a full
discussion). The medias location within the communication process means
that their own biases will also be projected onto the process (Cobb & Elder,
1981). Media frames, therefore organize the events for the journalists upon
whom the general public rely to report on events (Gamson & Modigliani,
1989). Individual frames describe how audiences make sense of the news
14 There is no consensus on the definition of framing across disciplines (Maher, 2001; Pan & Kosicki,
2001); viewpoints range from framing as a second level of agenda-setting (McCombs, 2004) to
framing as the overarching concept and possible general theory of communication (Maher, 2001). The
latter view of framing is the one taken for this study, as utilizing framing as an overarching concept
allows for identification of connections back to critical theory and concepts of power more readily than
other definitions. An exhaustive review of all definitions would be too divergent to give direction to
the research questions that should emerge from this section; therefore the focus is only on definitions
of framing that serve to forward the purpose of this study.
35


(Scheufele, 1999), in other words, they are the habitus of the individuals
within the audience.
Important to the issue of news framing in this context is the assumption
about the information content of the news and that facts themselves have no
intrinsic meaning. Instead, for issues that have risen high on the media (and
therefore the public) agenda (Dearing & Rogers, 1996), coherent meaning is
provided to the audience through the way the information is framed in the
media (Gamson & Modigliani, 1989). The informational content of the news is
relevant only to the extent that different frames can be distinguished (Gamson
& Modigliani, 1989). Information can be found in all types of media
messages, but different frames emphasize certain information over other
information, suggesting winners and losers (or simply conflict) within the
issue, as well as criteria by which the audience should judge the presented
information and which prior context should be relevant to the issue. A frame
can also be detected not only by what specific information is included, but by
what is excluded (Gamson & Modigliani, 1989). Framing can be thought of in
this case as actively placing information in a specific context so that some
elements receive a larger allocation of the individuals cognitive attention (Pan
& Kosicki, 1993). The determination of media frames is therefore not made
from the vantage point of the receiver of the information (the audience), but
by the sender or encoder (Gamson & Modigliani, 1989). Many reports can
have multiple senders or sponsors, thus suggesting multiple frames within the
same message, with some frames being unconsciously promoted by the
journalist resulting from their own experiences (Neveu, 2007; Gamson &
Modigliani, 1989). In other cases, a frame may be utilized overtly by the
sponsor to favor the interests of that group or organization or to neutralize
opponents (Gamson & Modigliani, 1989) reflecting the competition for
dominant positions of power within the discourse.
36


Framing goes beyond agenda-setting (what people talk and think
about) to show how issues are conceptualized and may even evolve over
time (Semetko & Valkenburg, 2000; Pan & Kosicki, 1993). Framing also
takes into account the language used in packaging the issues in the frame,
specifically, metaphors, catchphrases and other symbolic devices (Gamson &
Modigliani, 1989) which shape the social space. Words and the choice of
words organized into news stories hold great power in constructing the social
space by setting context, defining issues, and providing tools for discussion
(Pan & Kosicki, 1993). Framing is part of the communication process and is
dynamic rather than static, involving frame-building (factors influencing
structural qualities of frames) and frame-setting (the interaction between
journalistic habitus and audience habitus) (De Vreese, 2005). Furthermore,
associating discourse with framing brings in the concept of power, by
illuminating not only the frame but the political and economic powers that
shape the frame that is selected (Clarke & Van Amerom G., 2008).
Frame-building ! Frame-setting
Framing in the Newsroom Framing in the News Framing effects
- internal factors (editorial - issue-specific frames I-generic frames j : - information processing
policies, news, values) external factors effects - attitudinal effects - behavioral effects
Source: de Vreese (2005)
Figure 2.3 Process model of framing
Consequences of framing may happen on the societal level or the
individual level. On the individual level, consequences of framing could
manifest as an alteration in attitudes based on exposure to particular frames;
37


while on the societal level the frames may contribute to shaping policy,
decision-making, or collective actions (De Vreese, 2005). The point here is
not to simply examine what the media discourse does (or might do) to people,
but rather to think about what people do with the media discourse (Maher,
2001).
Mass Media Framing of Issues
Over the past 25 years, many studies have identified the existence of
one frame or another in the mass media content, and the possible
consequences of those frames on public opinion (Semetko & Valkenburg,
2000).
In an analysis of 2601 newspaper stories and 1522 television news
presentations, Semetko and Valkenburg (2000) utilized content analysis to
examine the differences in media frames between media types (television vs.
print media) and found that significant differences did not depend on media
type, but on the culture of the presenting organization. Regardless of media
type, sober and serious media outlets utilized responsibility and conflict
frames most often, while sensationalistic media outlets presented the human
interest frame most frequently (Semetko & Valkenburg, 2000).
As noted previously, journalists contribute their personal frame (Neveu,
2007; Gamson, 1992), or their own habitus, as well as other metaphors and
catchphrases that may be a part of both the journalistic and the audiences
social space when presenting issues to the public. On the other hand, the
media also become the field of power, as different sponsors or policy groups
compete for the dominant position in the discourse that is presented to the
public by the media.
To illuminate these different roles of the media and effects of framing,
Gamson (Gamson, 2001) provides direction for what he termed a full-fledged
38


frame analysis (p. ix). This type of frame analysis consists of three
components and combines concepts of agenda setting and critical theory:
1) Examination of the production process: through focusing on the
production process, such as the sponsors of the media messages,
issues of power and resources in the framing process to promote
specific agendas become visible. This struggle over frames and
agendas is then evident in and expressed through the texts.
2) Examination of texts: many frames may be found within the same
texts; thus they are not mutually exclusive but instrumental in
answering specific questions. Extracting frames from the
discourse depends on the question being asked. Some questions
reveal contrasting policy frames and agendas, other questions may
look for different frames employed by different groups in order to
advance specific agendas in the discourse. Analysis of the texts
may also reveal contrasting frames presented as rights versus
needs of the public, while others reveal frames of empowered
individuals or disadvantaged individuals in the public sphere15.
3) Examination of audience: audiences do not passively accept mass
media messages, rather they actively engage in negotiating
meaning from the texts. Meaning is constructed by the individual
through their own habitus and field. Therefore, the complex
interaction between the message and the audience must be
15 Note there is no direction given to the specific level of analysis (words, phrases, paragraphs, or
entire articles) to be used. Just as the definition of framing varies, so does the level of analysis
(Gamson, 2001). Gamson (2001) sees this constant variation in level of analysis not as a problem;
instead he recognizes that frames are simply a property of the text, the analysis of which is dependent
on the questions being asked by the researchers. Therefore, the level of analysis for texts is question-
specific.
39


examined to fully understand the whole picture of framing and its
effects16.
The present dissertation utilizes concepts from agenda-setting and
framing to structure an investigation from the perspective of critical theory.
Agenda-setting suggests the importance of issue salience, while framing
suggests the organizing principles that evolve from media work routines that
coherently and meaningfully structure the social space through symbolism
and discourse. After posing the research questions and hypotheses that will
guide the present study, this same theoretical lens will be used to examine
the case of mass media coverage and public opinion regarding the issue of
genetic testing.
Research Questions
Research Question 1 (Agenda-Setting): How important is the issue of DTC
genetics in the mass media and among audience members? (see figure 2.4)
Agenda-Setting Hypotheses
Ho1: The issue of DTC genetics will have similar salience on the
media and the public agendas (Figure 2.4).
HA1: The issue of DTC genetics will have different salience on the
media and public agendas.
16 Again, it is recognized that the analyses at this point would progress differently depending upon the
definition of framing applied to the research. For example, from a media-effects viewpoint the process
would emphasize the content of the texts and how specific content influences a passive audience as an
outcome. Analyzing frames as a second-order form of agenda setting would leave out the power issues
evident in the production process and the negotiated meaning by recipients (Gamson, 2001). Utilizing
this full three-level approach to framing analysis is best suited to the research questions asked by this
study, and provides the best guide for connecting framing with issues of power in critical theory.
40


Ho2: The media agenda and the public agenda related to the issue of
DTC genetics will be similar.
HA2: The media agenda and public agenda will not be closely related.
Figure 2.4 Hypotheses for research questions 1&2
Research Question 2 (Framing): How do the mass media frame the issue of
DTC genetics and how do individuals understand this issue? (see figure 4
above)
Framing Hypotheses
Ho1: Mass media messages will exhibit a consistency in framing the
issue of DTC genetics over time.
HA1: A shift in frames or a new agenda (or agendas) will be found in
the media texts.
Ho1&2
HA1&2
41


Ho2: Individuals will frame the issue of DTC genetics similar to the
mass media.
HA2: Individuals will frame the issue differently from the mass media.
Research Question 3 (habitus and field): Do individual perspectives about
issue salience and issue frames differ by population group?
Habitus and Field Hypothesis
Ho: Different population groups will discuss the issue of DTC genetics
using different frames.
HA: Different population groups will discuss the issue of DTC genetics
using similar frames across population groups.
Research Question 4 (power): How are the mass media being used as a field
of power by proponents of the DTC genetics issue?
Hypothesis for Research Question 4
Ho1: The media discourse will be representative of the issue of DTC
genetics from the policy agenda, utilizing mainly the policy frames and
symbolism to present the policy agenda to the public.
HA1: Frames from other proponents will be evident in the media.
Ho2: Only the groups already in possession of symbolic power related
to the issue of DTC genetics will be presented in the media.
HA2: Other issue proponents will appear within the media to challenge
the dominant discourse.
42


FIELD OF POWER
Ho
HA
MASS MEDIA
Figure 2.5 Mass Media as a field of power for DTC genetics
43
FIELD OF POWER


CHAPTER 3
THE ISSUE OF DIRECT-TO-CONSUMER GENETICS
Direct-to-Consumer Advertising
The current healthcare era is one of individualized and personalized
medicine, with a focus on personal responsibility for maintaining health.
Direct-to-consumer advertising of genetic tests and direct-to-consumer
genetic testing fit well into this frame of self-surveillance and risk
management as part of taking individual responsibility for ones health
(McGowan & Fishman, 2008). However, no direct evidence of consumer
response to such advertising and testing is available, nor is there information
on how potential consumers conceptualize the power provided to them from
the information gained from DTC genetic tests (McGowan & Fishman, 2008).
Results of studies on DTC advertising of pharmaceuticals are mixed, in
that the study by Murray (Murray et al., 2004) demonstrated an increase in
preventive care, treatment of untreated conditions, and disclosure of health
concerns among ethnic minorities, lower income and lower educational
background participants. Additional studies (Schillinger & Dohan, 2008)
found DTC advertising to have negative effects on the provider-patient
relationship and increased cost without increased health gain in lower SES
populations. In a controlled trial of DTC marketing effects (Kravitz et al.,
2005) patients (portrayed by actors) were more likely to receive a prescription
for the brand name drug or equivalent when they asked for the advertised
drug, regardless of whether symptoms necessitating treatment were present
44


or not. A study of television DTC pharmaceutical ads found limited
educational content, and typically minimized value of lifestyle change without
medication as a way to promote health (Frosch et al., 2007). An FDA survey
found that almost half of physicians believed patients were confused about
drug effectiveness due to DTC ads, additionally, up to 20% of physicians felt
pressured to prescribe the drugs (Kessler & Levy, 2007).
Results from a content analysis of 23 DTC prescription drug
advertisements on television during 2001 called into question the ability for
DTC ads to educate consumers, based on the requirements for fair balance
and adequate provision of information (Kaphingst, Dejong, Rudd, & Daltroy,
2004). They found that ads gave consumers more time to think about
benefits of the medication than its risks, and that additional product
information and references was presented only in text.
Clarke and VanAmeron (2008) examined 40 stories from the 20
highest-circulating English-language magazines in 2001 to examine framing
of heart disease and cancer in the press. They examined both manifest and
latent content of the articles and determined a lack of social determinants
perspective in favor of a biomedical model that underscores individualistic
response to the diseases, assumes access to healthcare, and emphasizes
within the discourse the independence, freedom, responsibility for lifestyle
choices or changes, and the power of the individual within the medical system
(Clarke & Van Amerom G., 2008). They acknowledge that cancer and heart
disease may be especially prone to the biomedical frame due to the
enormous expenditures of the healthcare system on pharmaceuticals and
medical treatment for these diseases (Clarke & Van Amerom G., 2008). Yet
by ignoring the role of social determinants such as income, education level,
ethnicity or race, housing, and other indicators of socio-economic status,
these issues are excluded from ever entering the public discourse.
45


Therefore, from the studies conducted, the postulated risks, and the
fact that DTC ads do not effectively portray important product information
(Kessler & Levy, 2007), many scientists, physicians, professional groups and
even governments have concluded the harms of DTC marketing outweigh its
potential benefits (Brody, 2008; Stange, 2007a; William-Jones, 2006). Yet,
the policy consensus appears to fall on the side of the benefits of DTC
marketing (Williams-Jones & Burgess, 2006), as US and New Zealand permit
DTC advertising of pharmaceuticals, despite the ban on such practices by
every other European government and opposition from public and
professional groups (Borry & Howard, 2008; Frosch et al., 2007; William-
Jones, 2006; Williams-Jones & Burgess, 2006). Improved regulation of the
industry is routinely called for (Frosch et al., 2007; Chapman, 2008; Wasson,
2008), as FDA oversight of advertisements for false and misleading claims
had declined to only 32% of advertisements in 2004 (Donohue, Cevasco, &
Rosenthal, 2007).
The majority of industry resources do go toward marketing to health
care providers, but spending on DTC advertising continues to grow despite
cautions against it and lack of data supporting the cost-benefit of the
advertising (Donohue et al., 2007). Yet without a trusted independent
distributor of health information in the US, much of the health information
provided to the public comes from private industry marketing these products
(Schillinger & Dohan, 2008). The point raised by DTC critics is that it is
unrealistic to expect private industry to exercise corporate responsibility and
consistently align its health messages with the greater objectives of public
health (Schillinger & Dohan, 2008; Stange, 2007a).
46


The Myriad BRACAnalysis DTC Campaign
Myriad first began DTC advertising its BRCA1/2 testing with a full page
advertisement in the playbill of Wit, a Tony Award-winning play about a
woman dying of stage IV ovarian cancer (Matloff & Caplan, 2008). The ad,
with a headline saying the only thing worse than hearing you have cancer is
hearing it twice was admonished for targeting a vulnerable audience, and for
being misleading and manipulative (Matloff & Caplan, 2008; Chandros Hull &
Prasad, 2001).
From September 2002 February 2003 (Myriad Genetics, 2002), a
full-fledged marketing campaign including television, magazines, and other
mass media was test marketed in Denver, CO and Atlanta, GA. This
campaign was presented by Myriad as a public service campaign to educate
women and physicians about hereditary breast and ovarian cancer and their
options (William-Jones, 2006). The timing of the campaign launch to coincide
with the US National Breast Cancer Awareness month was not coincidental
(William-Jones, 2006). This DTC advertisement spawned the voicing of
grave concerns by the chairman of the American Medical Association
(Kahn, 2003) along with a flurry of debates in the scientific literature and lay
press (American College of Medicine Genetics Board of Directors, 2004;
Gollust et al., 2002; Gray & Olopade, 2003; Austin, 2002; Chandros Hull &
Prasad, 2001; William-Jones, 2006).
Due to the strong controversy, a government agency, the Center for
Disease Control (CDC), and a large HMO, Kaiser Permanente Colorado
(KPCO) conducted surveys of consumers and health care providers to
examine the impact of the advertisement. Results from these studies
determined that some concerns were well-founded: referrals for services at
Kaiser Permanente Colorado (KPCO) increased over 200%, with most of that
increase in women with a low risk of having a genetic mutation in BRCA1/2
47


(Mouchawar et al., 2005a). While exposure to the advertisement was
associated with greater awareness (Mouchawar et al., 2005a; Centers for
Disease Control, 2004; William-Jones, 2006; Myers et al., 2006), the CDC
found no increase in knowledge of genetic testing after DTC marketing when
pilot cities were compared to control cities (Centers for Disease Control,
2004). Consistent with other studies indicating low primary care provider
knowledge of genetics (Mouchawar et al., 2001; Wideroff, Vadaparampil,
Breen, Croyle, & Freedman, 2003; Escher & Sappino, 2000), the CDC also
found that health care provider knowledge about genetic testing did not
increase in cities exposed to the Myriad DTC campaign (Centers for Disease
Control, 2004), but instead found that provider confidence and/or ability to
relay genetic risk information was lacking (Gray & Olopade, 2003; Mouchawar
et al., 2005b; William-Jones, 2006).
Analyses of the BRACAnalysis television commercial found that it
downplayed the uncertainty and limited value of the genetic test (Mykitiuk,
2004), that its cheerful and optimistic demeanor overstated the test's power
to reduce cancer risk (William-Jones, 2006), and that it failed to raise the
issue of discrimination (by employers or insurance companies), nor did it
mention the USPSTF warning (USPSTF, 2005) about potential negative
psychological consequences of testing (William-Jones, 2006; Mykitiuk, 2004).
Mykitiuk (2004) also noted that the use of the standard phrase, talk to your
doctor would give women the impression that physicians agree with the
advertisement. However, when asked to consider nine possible emotions
about the advertisement, women responding to the KPCO survey
overwhelmingly reported feeling very grateful for being told about genetic
testing (Laurion, Ritzwoller, Kulchak-Rahm, Hensley-Alford, & Mouchawar,
2008). The authors postulate that this could undermine the physician-patient
48


relationship by producing feelings of mistrust for a doctor who did not
previously provide information about this test (Laurion et al., 2008).
Despite the controversy surrounding the test marketing campaign,
Myriad launched a similar DTC marketing campaign of the same commercial
in the Northeast United States in September, 2007, again, billed as a public
awareness campaign with the intent to save lives (Matloff & Caplan,
2008)17. Opponents of the campaign argue that leaving public education
about BRCA1/2 in the hands of the company that directly profits from the use
of the tests opens the door to commercial manipulation in the form of public
health education (Matloff & Caplan, 2008). As a result of the most recent
BRACAnalysisDTC advertising campaign, Myriad revenues were up 55%
compared to the same quarter in 2007, with gross profits up 70% during the
second fiscal quarter of 2008 (Myriad Genetics, 2008b). The company report
attributes this in part to the BRACAnalysis campaign (Myriad Genetics,
2008b). By the end of 2008, product revenues hit a record $222.9 million (up
53% from 2007) even though the campaign in the Northeast had ended in
March 2008 (Myriad Genetics, 2008a). In September 2008, the campaign
was again launched in the Southern region (Texas and Florida) with similar
reporting of 55% increase in revenue due to what the company now calls in
its reports its direct-to-consumer marketing campaign (Myriad Genetics,
2008b).
Beginning with the release of the DTC campaign in the Northeast
region, debate about risks and benefits of DTC advertising of genetic tests
again erupted in the scientific literature, as well as calls for policy changes
17 The current BRACAnalysis commercial may be seen at http://www.bracnow.coni;'. With the
exception of added prominence to the website instead of the toll free phone line, the DTC
advertisement is the same one that aired in the Denver and Atlanta test markets in 2002. The consumer
website promoted by the commercial is different from the general company website and can be viewed
at wmv.bracnow.com or at
www.voutube.eom/JustAskHBOC#p/c/5A3CD608C65F792F/2/uHXAciD41JO
49


and government regulation of the industry (Matloff & Caplan, 2008). The
controversy in the scientific literature spilled over to the lay press as well, due
to the increasing availability of many other genetic tests besides
BRACAnalysis which are offered directly to the public. Chapman (2008)
called this the perfect storm of public health, because of the lack of federal
standards governing the genetic tests, the suspect advertising claims of the
companies, the marketing of genetic tests for prescribing and dosing
medications, and the consistent lack of knowledge and training in genetics for
primary care physicians (Chapman, 2008).
Public Perception of Genetics
Framing Genetics for the Public
Genetics and genetic technology issues have seen growing attention
from researchers, policy makers, consumers, and the press (Ten Eyck &
Williment, 2003). The popular press, Hollywood, and television media have
all utilized genetics as a primary topic or theme. Time and Newsweek
magazines have devoted numerous covers to human genetics, typically
casting it as a miracle technology that will revolutionize the practice of
medicine (Caulfield, 2006). In just the New York Times and the Washington
Post, over 100 articles relating to genetics were published per year between
1984 and 1987, and more than 200 per year were published since 1988 (Ten
Eyck & Williment, 2003). In another study, Capella et al (2005) identified
more than 8000 stories on genetic influences on disease and behavior
between New York Times, AP wire services, broadcast news, and the top 20
US newspapers appearing from 1997 2003 (Cappella, Lerman, Romantan,
& Baruh, 2005).
50


Most consumers, physicians, and policy makers have little experiential
knowledge of molecular biology and genetic biotechnology (Ten Eyck &
Williment, 2003; Goddard et al., 2007), making the mass media and
biotechnology companies offering DTC genetic tests the primary sources of
information about genetics (Liu & Pearson, 2008). This dependency on the
media for dissemination of research findings to the public keeps scientists
dependent on how journalists frame the issue for the public, resulting in a loss
of direct control of the scientist or clinician over ultimate perception of the
issue (Condit, 2004). Journalists must translate scientific findings using
metaphors derived from their own experiences, the demands of their editors,
and of the controlling interests. The result of this translation then forms the
frame presented to the public; thus contributing to assumptions by scientists
that media coverage of medical issues is inaccurate (Condit, 2004).
To determine how the issue of genetics was framed in the US elite
press, Ten Eyck and Williment (2003) performed a content analysis of over
2700 articles from the New York Times (1971-2001) and the Washington Post
(1977-2001) related to genetics in medicine and food. Using news frame as
the dependent variable, they looked for progressive frame, economic frame,
and globalization frame in the articles. Results showed that, especially in the
area of medicine, articles were presented using the progressive frame (Ten
Eyck & Williment, 2003). They also found that legitimization of issues in the
press depended heavily upon cultural contexts, supporting the idea that
media may be a reflection of public opinion rather than a creator of it, since it
may be more difficult to contest the biomedical model which seeks to find
medical answers to social and personal issues and easier to question food
production processes (Ten Eyck & Williment, 2003).
Within the field of medical genetics there is a growing concern about
the geneticalization of public health as more information about genetic risk
51


becomes widely available (Cheng, Condit, & Flannery, 2008). As studies
reveal more information about individual susceptibility to disease, people will
be able to learn their risks for future illness which will in turn enable them to
better practice health maintenance and disease prevention per the biomedical
model (Collins, Green, Guttmacher, & Guyer, 2003). However,
communicating about genetics to the lay public is challenging, as there is a
tendency for people to view genetic causation of disease as inconsistent with
behavioral intervention, thus separating the genetic from the environment
and limiting any ability for the two to be viewed as interactive (Cheng et al.,
2008; Walter & Emery, 2006).
Capella and Colleaugues (2007) examined 964 print and broadcast
news stories from January 1997 through December 1999 for media coverage
of genetics related to cancer risk and behavioral traits related to cancer
(smoking). Articles were analyzed if they contained at least one framing
sentence, and then were also examined for credibility, exemplars, and
efficacy. Genetics was framed as deterministic in over half of the media
reports regardless of news type or disease (cancer/ non-cancer), with genetic
risk information about cancer more likely to be presented in ways that
highlight uncertainty more than other diseases. They also found that
broadcast news utilized more exemplars and efficacy, yet print media
presented more credibility frames (Cappella, Mittermaier, Weiner,
Humphreys, & Falcone, 2007).
Cheng, Condit, and Fannery (2008) examined websites making
recommendations to the public regarding behavioral causation and prevention
of heart disease, diabetes, lung cancer, or depression. Utilizing content
analysis, they examined 73 online recommendations from major health
institutions and online portals to examine the depiction of the gene-
environment relationship. They found that overall, 72 of the 73 web pages
52


mentioned behavioral factors, with 23 mentioning physical environmental
factors, and 19 discussing social facilitation of disease risk, although the
preponderance of discussion of one factor over another or the number of
factors was diseases dependent (i.e. one factor for heart disease, two for lung
cancer and depression). More than half of the web pages provided genetic
risk information, yet none attributed health status to genes only, favoring the
behavioral regulation of the diseases. Yet the genetic factors and
environmental influences were consistently presented as working
independently rather than interactively to affect disease risk. Again, what is
not presented in the discourse becomes apparent in the absence of
presentation of accurate and direct representation of gene-environment
interaction in any medical recommendation web page examined by the
authors (Cheng et at., 2008).
Similarly, through DTC advertising and media coverage, broader public
health issues are missed through exclusion. For example, Factor V Leiden
(FVL) is a genetic trait relating to blood clots that is prevalent enough in the
population to affect a number of people, and treatment for people with a
genetic alteration is highly effective in avoiding venous thromboembolism
(VTE blood clots). Also, mortality from VTE exceeds the number of deaths
from breast cancer (Hirsh & Hoak, 1996). However, other than news stories
covering the deaths of a few individuals, the thrombosis-related issues and
genetic tests have received negligible media coverage, despite the potential
public health benefit if strategic risk messages about FVL and genetic testing
availability were presented to the public (Parrott et al., 2008).
Framing DTC Genetics
Similar concerns about the framing of genetics by the mass media
continues with the increasing availability of DTC genetic tests (Goddard et al.,
53


2009b). This area is considered especially vulnerable, as DTC genetic
testing removes the health care provider from involvement in the ordering and
interpretation process of genetic testing. This has prompted many
professional organizations to issue position statement on the issue of DTC
genetic testing (American College of Medicine Genetics Board of Directors,
2004; National Society of Genetic Counselors, 2007; Hudson et al., 2007;
Ameer & Krivoy, 2009). As of 2008, there are genetic tests available to the
consumer for over 1200 diseases, with this number likely to grow rapidly due
to increasing development of technology (Liu & Pearson, 2008).18 Large
scale advertising of DTC genetic tests through mass media is still rare;
instead most DTC testing companies have developed a web presence,
making corporate websites the main source of DTC marketing information
(Liu & Pearson, 2008).
Goddard and colleagues (2009) analyzed websites of DTC genetic
testing companies for adherence to professional guidelines or federal
regulatory requirements for pre or post-test genetic counseling, laboratory
accreditations, privacy policies, cost, and methods for reporting results. They
identified 84 tests sold on 27 websites. Twelve tests were for
pharmacogenomic uses (genetic variations to drug responses), 10 were for
thrombosis (genetic variation in blood clotting disorders), and 10 were for
nutrigenomic uses (genetic variations plus diet and lifestyle information for
nutritional supplement recommendations). Others were found for fetal sex
testing (5 sites) and hereditary hemochromatosis (5 sites). About one third of
the tests were offered both DTC and via the traditional medical model, but
these were mainly tests for mendelian-inherited diseases (e.g. Tay Sachs
disease or Fragile X syndrome) or distinct conditions (BRCA1/2 testing or
18 There are currently over 2000 diseases with genetic tests available as of October, 2010
(www.genetests.org accessed 10/15/2010).
54


hereditary hemochromatosis) which are traditionally performed in the clinic at
this time. Over two-thirds of the genetic tests offered, including fetal sex
testing, nutrigenomics, and prediction of smoking cessation, were offered
outside the traditional framework of clinical medicine. An additional in-depth
content analysis of websites offering DTC tests for thrombosis found very low
adherence to professional guideline or federal recommendations (Goddard et
al 2009a).
In the most comprehensive study to date of DTC testing sites and their
online marketing practices, Liu and Pearson (2008) searched for DTC genetic
testing companies on the web in July 2006 and again in December 2007.
They found 46 sites with consumer-targeted content and 17 sites targeted
toward health professionals; 24 of the sites had content targeted toward both
audiences. Of note, in the time frame between searches, they found a
number of companies that either changed corporate identity or ceased to
exist, highlighting the current volatility of this market. Overall, they found that
a little under half of the sites required intervention by a healthcare provider for
ordering or giving results for the test. Of the other half of the sample, 43.5%
allowed direct ordering with no provider intervention necessary, with the other
11 % allowing the consumer to direct-order the test, but required a healthcare
professional to submit the sample or deliver results. Fewer than half of the
consumer-targeted websites offered information or links to basic genetic
facts, and only about one-third of sites targeted toward healthcare
professionals offered such information or links.
Liu and Pearson (2008) also found that just under half of the websites
provided information about probability and that a positive result does not
necessarily indicate the disease will manifest. Three websites (all with testing
available without healthcare intervention) contained statements clearly
reflecting genetic determinism. The authors conclude that these sites may be
55


taking advantages of the inadequate oversight of DTC genetic testing, as only
about 15% of consumer sites presented risks as well as benefits of testing in
compliance with the fair balance requirement of DTC advertising. Of sites
offering only DTC genetic testing, 95% were missing information on viable
alternatives (such as family history, lifestyle, or non-gene-based tests) for
determining risks, thus raising the potential for unnecessary testing by
exaggerating benefits of genetic testing. Further, only 54% of the 46 websites
offered information for providers on the validity and utility of the tests, so that
providers could assist consumers in the decision-making process. Two sites
did require pretest genetic counseling (per professional recommendations),
but may others openly discouraged professional participation in the decision-
making process, potentially compromising the physician-patient relationship
(Liu & Pearson, 2008).
The final part of the analysis focused on the emotional appeals within
the websites offering DTC genetic tests. The most frequently utilized appeal
was warmth and empowerment with 90% DTC genetic testing sites using this
technique versus only one-third of the non-direct (physician-mediated) order
sites; potentially encouraging consumers to take a genetic test without
considering the consequences. Among sites with both consumer and
provider portals, happiness/joy, assurance, and relief appeals were utilized
more frequently on the consumer side, leading the authors to posit that the
companies are deliberately positioning themselves between the consumer
and the provider as a compassionate agent; potentially augmenting the
persuasive power of their marketing message (Liu & Pearson, 2008).
McGowan and Fishman (2008) argue that while the Myriads DTC
campaign uses public fear of breast cancer to market to the at-risk community
of informed, empowered, and autonomous women" (Matloff & Caplan, 2008),
such tactics may not have the same level of salience in the DTC genetic
56


testing market(McGowan & Fishman, 2008). The fear-based approach may
be less effective in this market, since companies and the media present these
tests as an informational product, not as a clinical test(McGowan & Fishman,
2008). Consistent with the empowerment theme found by Liu and Pearson
(2008), the companies frame themselves by using such taglines and catch
phrases as "with this knowledge comes power (Navigenics)19, "we believe
that your genetic information should be controlled by you (23andMe), and
your genes. Your health. Your choices (DNA direct). McGowan and
Fishman (2008) observe that the consumer base for DTC genetic testing
services remains undefined at this time. Nor is it known how the current
consumers of these tests conceptualize the power the genetic information
provides them (McGowan & Fishman, 2008).
Finally, what information is available on Myriads DTC advertising
campaign may not be generalizable to DTC genetic testing, however there
are similarities and lessons to be learned (McGowan & Fishman, 2008). DTC
genetic testing utilizes a similar frame as Myriads by directing individuals to
use the information from the DTC genetic test to take responsibility for their
own health. That genetic knowledge empowers consumers is also a common
frame (McGowan & Fishman, 2008; Hall & Gartner, 2009; Lee & Crawley,
2009; Bowen, Battuello, & Raats, 2005; Gulcher & Stefansson, 2010). While
fear of breast cancer specifically may be greater that fear of disease in
general, McGowan and Fishman (2008) argue that the value placed by the
public on DTC genetic tests must be assessed within the current socio-
historical context, where consumers may interpret results as informative for
19 Company websites may be found at: http://www.navigenics.com/ https://www.23andme.com/',
http://www.dnadirect.com/web/ Their tag lines change rather frequently, however, the framing remains
consistent with these results
57


healthcare decision making because genetic testing remains mostly within the
realm of the clinical use at this time (McGowan & Fishman, 2008).
Media Effects and DTC Advertising of Genetics
While many of the studies of DTC advertising of genetics and DTC
genetic tests provide policy recommendations and call for stricter regulations
on companies, knowledge is limited on how consumers actually respond to
these types of marketing messages (Liu & Pearson, 2008; Parrott et al.,
2008). In fact, very little information is known at all about consumers of DTC
genetic services. This is especially concerning, given that in 2007 global
spending in this market stood at $730 million, with projections for growth of
20% per year (Borry & Howard, 2008)
Studies about the general publics understanding of genetics have
shown the persistence of misconceptions about genetics and the role of the
media in framing memorable messages. Rose and colleagues (2005)
conducted focus groups with 38 adults recruited through newspaper
advertisements and fliers in the Philadelphia area about awareness,
knowledge, and attitudes about genetic testing for cancer risk. While some
participants demonstrated accurate understanding of genetic testing and its
uses, the authors identified other prevalent themes such as the ability to gain
control of ones life through genetic testing, concern over risk of employment
or insurance discrimination, and use of genetic information for racial or ethnic
discrimination (Rose, Peters, Shea, & Armstrong, 2005). Parrott (2008)
conducted a survey of 482 undergraduate students with open-ended and
thought-listing questions about genetics and health, media messages or
images that come to mind about genetics and health, and beliefs about risk
from family history. Results showed that over half of the respondents
identified movies, and to a lesser extent television and print media, as the first
58


media message about genetics and health that came to mind. Movies such
as Gattaca, Jurassic Park, and Multiplicity were specifically named by
respondents as a memorable message. 70 participants referenced cloning as
their first thought about genes and health. When asked about health risks
due to family history, respondents often listed two issues for which they felt
they had inherited risk. Cancer, heart disease and diabetes made up nearly
half of the responses for inherited risk, with cancer being the most reported.
Finally, over all, the messages recalled tended to be emotion-laden(Parrott et
al., 2008). While this study showed a strong influence of movies on public
perception, it should be noted that the respondents were all undergraduate
college students with a mean age of 19 years (Parrott et al., 2008). This
population likely has very little experiential knowledge of genetics and may be
more prone to watching movies than purposefully seeking information on
genetics and health from other sources.
A study by Deshpande and colleagues (2004) attempted to assess
consumer attitudes toward DTC pharmaceutical advertisements to determine
factors influencing opinions and actions around heath care decision making.
In 1999 they surveyed 1205 consumers nationwide through random digit
dialing as part of a study through Prevention magazine. Respondents were
not asked about specific DTC ads, only about their opinions and utilization of
any DTC ads they had seen. Overall, respondents had a positive perception
of DTC ads, valued information about both risks and benefits, but perceived
risks as being more important in shaping opinions about the utility of the
advertisement. Conversely, respondents perceived the quality of benefit
information to be superior to the risk information, supporting consumer
advocates who contest that DTC ads do not adhere to federal guidelines to
present balanced information. Opinions about DTC advertisements appeared
to influence decision-making, in that 42% reported using the advertisement in
59


their decision-making process. 19% of those used the ad to discuss a
medical condition with their doctor, while 13% requested the advertised drug.
Women were also more likely to perceive the ads as useful for decision
making, as did consumers reporting poorer health (Deshpande, Menon, Perri
III, &Zinkhan, 2004).
Outside of the United States, Borry and Howard (2008) reported in an
editorial the differences between American and European contexts regarding
DTC advertising and DTC genetic testing. Focus groups and internet surveys
of public attitudes conducted in the United Kingdom (UK) reported results that
respondents in that country found physicians more credible compared to the
companies offering DTC genetic tests; they also reported little need for DTC
genetic tests, also noting that they did not feel they had the ability to deal with
test results without the aid of appropriate medical input or genetic counseling.
Respondents also reported high levels of trust in the medical system,
encouraged strict regulation of DTC genetic tests, and also reported the need
to protect vulnerable populations. However, there is a distinct difference in
the UK in that healthcare is provided universally, and government is involved
in the limiting or outright banning of DTC advertising and DTC genetic
testing(Borry & Howard, 2008). While no such comparable survey exists to
ascertain US public perception of DTC advertising and genetic tests, Borry
and Howard (2008) distill the results from a 2001 National Science
Foundation survey noting findings of higher levels of public support for DTC
genetic tests in the US and Canada, particularly in areas pertaining to
usefulness of tests, moral acceptability, and the feeling that such tests should
be encouraged. The authors posit that these distinct differences may be due
to the increasingly active role that individuals have been required to take in
the American healthcare system (Borry & Howard, 2008). However, as stated
previously, while most of the DTC genetic testing companies are located in
60


the US and many European governments ban such testing, the global
marketplace available through the internet removes many barriers to
obtaining these services regardless of the consumers location (Borry &
Howard, 2008).
Even fewer studies have attempted to examine both media messages
and effect on public perception together in a true media effects study. In
2005, the International Journal of Public Opinion Research published a
special section on results from a study of mass media on public perception of
biotechnology. The study involved analysis of European elite-press coverage
of biotechnology from 1973 1999, surveys of public perceptions in 1996 and
1999 via the Eurobarometer, a general population survey conducted in 12
European countries (Bauer, 2005b), in order to examine evidence of media
effects. Results of readers compared to non-readers of the elite press from
1992-1999 found no significant differences in attitudes towards biotechnology
despite increasing media coverage during that time; indicating that increased
media coverage was not leading to the hypothesized outcome of negative
public attitudes toward biotechnology (Gutteling, 2005). From the same data,
Bonfadelli (2005) looked for evidence of increased knowledge gap resulting
from increased media coverage. From the two Eurobarometer surveys, it was
found that people in countries with overall higher education levels and more
intensive personal and mass mediated communication had more
biotechnology knowledge than countries with lower overall levels of
knowledge and communication, thus showing evidence of increased media
coverage being associated with maintaining of an existing knowledge gap
between countries. Of note, no evidence of increasing media coverage
leading to increased knowledge gap within countries was observed
(Bonfadelli, 2005). Finally, the data set was examined for differences in
media coverage between medical genetics and agricultural genetics (the
61


red/green distinction) (Bauer, 2005a). Throughout the 1990s they found
that medical biotechnology (red), such as pharmaceutical and genetic uses,
was framed much more favorably in the press than agri-food biotechnology
(green). Results from the Eurobarometer surveys showed that medical
biotechnology carried more public support, while agri-food biotechnology was
less favorably supported by the public, and this public opinion converged over
time with the media messages in the elite press (Bauer, 2005a).
Another pair of studies examined media effects of information on
genetics related to smoking cessation and genetic risk for tobacco addiction
(Cappella et al., 2005; Lerman, Kang, & Cappella, 2006). Both studies were
part of a national sample of 450 young adult (age 18-25) smokers contacted
via random-digit dialing from May June 2002. Both media effects studies
were embedded within a survey about cigarette smoking practices (Cappella
et al., 2005). The first study examined the effect of priming subjects with a
belief in genetic susceptibility to smoking addiction on smokers beliefs about
their own susceptibility to addiction, efficacy to quit smoking, and intent to
have a genetic test for tobacco addiction susceptibility (Cappella et al., 2005).
The 450 survey respondents were randomized into groups that received
either a genetic or a non-genetic story condition (priming). Additionally,
respondents reporting at least one first degree relative with a history of
smoking were identified and randomly assigned, so that half of those with a
family history of smoking were in each test condition. Genetic and non-
genetic stories began with the statements, The news media have recently
reported on studies done by the National Cancer Institute suggesting that....
Both the genetic story (some people may have inherited predisposition to
addiction) and the non-genetic story (smokers have more girl babies) actually
appeared in the press, however, results showed no effect of the priming on
inference of genetic risk for tobacco addiction. However, respondents with a
62


strong family history of smoking and reporting believability in the genetic story
were more likely to infer greater personal risk due to genetics. The authors
also found that any effect of the believability of the genetic story and family
history of smoking on intent to have a genetic test was mediated through
inference of personal likelihood of having inherited such genes (Cappella et
al., 2005).
The second study embedded in this sample assessed the effects of
deterministic vs. probabilistic message frames with and without efficacy
information regarding genetic susceptibility to smoking addiction on personal
efficacy to quit (Lerman et al., 2006). 201 respondents from the previous
survey of 450 were recontacted and randomly assigned to hear deterministic
or probabilistic message frames for genetic influence on smoking addiction.
Results indicated that smokers found the deterministic statements less
believable in general; yet they were more likely to infer a personal genetic
susceptibility when the statement was framed as deterministic without efficacy
information. Furthermore, they were then less likely to accept the claim that
personal factors are equivalent to genetic factors in successful quitting efforts.
When efficacy information was included with the strong deterministic frame,
this frame was mitigated such that respondents believed that non-genetic
factors were as important as genetic factors to successful quitting (Lerman et
al., 2006)
Significance of the Current Research
For years researchers have commented that there is a lack of
information on how the presentation of health information in the mass media
affects public attitudes in genetics and other areas (Lerman et al., 2006).
63


Recently the pressing need for empirical data on who are the consumers of
DTC genetic tests, and how these tests are marketed has again been noted,
as anecdotal reports and theorized consumer responses to DTC marketing
will be insufficient in this era of rapidly increasing availability of DTC genetic
tests and marketing (McGowan & Fishman, 2008; Lee & Crawley, 2009;
McGowan & Lambrix, 2009; Jordens, Kerridge, & Samuel, 2009; Bloss et al.,
2010). It is not even known at this time if the general public is even aware
that DTC genetic testing exists, or if consumers are aware of the ethical
concerns associated with such testing (Wasson, 2008), or of the potential
physical and/or emotional harm to themselves or their family from the
misinterpretation or misuse of genetic data (SACGHS, 2004; Majdik, 2009).
That public knowledge of genetics is influenced by media coverage to some
extent is clear. Numerous studies have been conducted on media
presentation of genetics and genetic testing, as well as studies on the public
perception of genetics and genetic testing. While a few studies have
attempted to examine media effects through media coverage and surveys of
public perception, to my knowledge no studies have attempted to construct
the field of power around the issue of direct-to-consumer genetic testing and
advertising by framing the discourse in both the mass media and public
opinion.
64


CHAPTER 4
MEDIA ANALYSIS:
ISSUE SALIENCE, THE MEDIA AGENDA, AND ISSUE FRAMING
Using analyses of frames and agenda-setting within media and public
discourse, this study was designed to define the mass media as the field of
power in which the issue of direct-to-consumer genetics (PTC genetics) is
contested.20 To this end, the issue of DTC genetics in the mass media was
explored with the following hypotheses from the research questions detailed
in chapter 2:
Research Question 1 (Agenda-Setting): How important is the issue of
DTC genetics in the mass media?
1) What are the salient topics in the mass media related to the issue
of DTC genetics?
2) What is the media agenda related to the issue of DTC genetics?
Research Question 2 (Framing): How do the mass media frame the
issue of DTC genetics and how does it change over time?
20 DTC genetics as defined in this dissertation encompasses the companies which advertise and/or sell
genetic tests directly to consumers, the risks and benefits of genetic testing that is advertised directly to
consumers, purchased directly by consumers, and provides test results directly to the consumer without
the intervention of a qualified health care professional. The issue of DTC genetics also encompasses
the broader topics around genetic testing for common disease risk, such as legislation and new
disease/condition-related genes discovered, as disease risk information is a part of information offered
by these tests, and whether these tests provide medical information or not is at the heart of the debate
regarding regulation and legislation of DTC genetics.
65


Research Question 4 (power): How are the mass media being used as
a field of power by proponents of the DTC genetics issue?
1) What agenda can be discerned from the topics and frames
presented by the mass media about the issue of DTC genetics?
2) Do the topics or frames presented by the mass media change over
time?
Media Analysis Methods
Data Collection of Mass Media Sources:
In this portion of the study I examined national and local television and
news stories in the mass media for the time period between September 1,
2007 and September 30, 2009. This time frame was determined based on
major events that partly define the issue of DTC genetics, including the region
by region roll-out of the DTC advertisement aired by Myriad Genetics for
BRACAnalysis, the launch of the major DTC testing companies, and the
signing of the Genetic Information Non-Discrimination Act (GINA). During this
time period other annually recurring events related to genetics and health also
occurred: National Breast Cancer Awareness Month (October), National
Family History Day (Thanksgiving Day), Colon Cancer Awareness Month
(March), National Wear Red Day (heart disease and stroke awareness,
February 1), and Annual DNA Day (April 25). These calculated and annually
recurring events can be utilized by proponents of an issue to promote its
salience and to influence the framing of the issue in ways that help the
proponents achieve their objectives.
The media search engine, LexisNexis Academic was used to identify
mass media stories during the study time period. Scientific literature
databases were not included, as my focus was on non-technical information
66


sources generally accessible to the public. Search categories included all
major US publications, newswire services, TV and radio transcripts,
magazines, blogs, and web publications. Additionally, all local media
(television and print) available in the LexisNexis search file were specifically
included in the search criteria. I included sources of newsletters, blogs, and
web publications in the search due to previous results of mine and colleagues
(Laurion et al., 2008) from the regional (Denver and Atlanta) test-marketing of
the Myriad Genetics BRACAnalysis campaign in 2002 which indicated that
general population members did not differentiate between information from
the DTC advertisement, news stories, magazine stories, and national media
spots such as talk shows or other sources. Also, with ubiquitous internet
sources, blogs, google searches and other ways to obtain information,
limiting my search to only include print and television news sources would not
provide an accurate picture of mass media messages the general public may
have been exposed to on the subject.
My objective was to examine stories related to the issues of DTC
genetics through topics in which the issue was likely to be discussed, such as
topics of cancer, discrimination, test validity, legislation. I also examined the
issue of DTC genetics indirectly through genes and genetic risk for common
complex diseases with multigenic and environmental causes, because these
are often included in the DTC company testing panels or are reported in the
media as the latest gene discovery, indicating the availability of testing or risk
identification for the condition or gene. I used the keywords of genetic
testing with Boolean operators as the primary search criteria. To increase
the efficiency of the search, exclusion terms were used to exclude articles
about genetic testing related to newborn screening, forensic testing,
genetically engineered food, cloning, prenatal testing, consanguinity, paternity
testing, gene patents, stem cell research, H1N1 and other vaccine/virus tests,
67


and animal genetic profiling.21 Once the stories were retrieved from the
search, a manual review was required to exclude stories from non-US and
other geographically-limited sources not likely accessed by the local
population, as well as quarterly pharmaceutical company reports, and
television or news teasers.
I also manually excluded stories concerning ancestry-only and
pharmacogenetic-only testing. These tests are part of many DTC testing
company results and are often lumped in with the term personalized
medicine," and were not excluded from the final dataset if the story was about
a DTC testing company or if the story mentioned pharmacogenetic or
ancestry testing as part of a larger story about DTC genetics. I excluded
pharmacogenetic testing only stories because many pharmacogenetic tests
are performed on tumor tissue and only have implications for the treatment of
that individual tumor. Other pharmacogenetic tests may look at inherited
response to drugs, but results are more straight-forward than disease-risk
testing and not likely to have a complex decision-making process or
necessitate referral to a genetic counselor (O'Daniel, 2010). Likewise,
ancestry testing is not typically conducted in the medical setting nor does it
generally require consultation with genetics professionals as the underlying
issues related to this type of testing do not overlap the issues related to
testing for disease risk enough to keep these stories in the dataset. Table 4.1
is adapted from a 2008 report of the Secretarys Advisory Committee on
Genetic Testing and (Secretarys Advisory Committee on Genetics, 2008)
21 Search criteria limits set as follows: Terms: (((genetic testing) AND NOT (paternity) AND NOT
(criminal) AND NOT (flu) AND NOT (HIV) AND NOT (forensic) AND NOT (ancestry) AND NOT
(animal) AND NOT (embryo) AND NOT (prenatal) AND NOT (plant) AND NOT (dog) AND NOT
(cat) AND NOT (crops) AND NOT (agriculture) AND NOT (investment) AND NOT (obama) AND
NOT (swine flu) AND NOT (H1N1) AND NOT (transplant) AND NOT (disability) AND NOT
(cryobank) AND NOT (patent) AND NOT (vaccine) AND NOT (immune) AND NOT (crime)) and
Date(geq(09/01/2007) and leq(09/30/2009)))
68


further illustrates the definition of type of genetic testing that is part of the
issue of DTC genetics and the types of genetic tests that were excluded from
this media analysis.
69


Table 4.1 Types of genetic tests included and excluded from this study22
Test Type Definition Inclusion/Exclusion
Types of genetic tests for gene mutations with high penetrance
Diagnosis of genetic disease Testing patient with clinical findings indicative of a specific disease to establish the diagnosis Excluded
Newborn screening Testing newborns to identify the presence of condition(s) that require immediate initiation of treatment to prevent death or disability (e.g. Phenylketonuria, PKU) Excluded
Carrier tests Testing performed in an asymptomatic adult to identify whether the individual is a carrier for an autosomal or X-linked recessive condition Excluded
Prenatal tests Testing to identify a fetus with a genetic disease or condition, such as Down Syndrome prior to birth. Testing is usually initiated due to family history or maternal factors. Excluded
Presymptomatic tests for adult onset of a genetic condition Testing adults to identify a genetic condition that will occur later in life such as Huntington disease Excluded
Test Type Description Inclusion/Exclusion
Types of genetic tests for gene variants associated with genetic susceptibilty
Test to predict drug fDharniacoaen6tic6l ''f~, > 7': *1, Test to assess Testing to identify individuals likely to have a reduced or increased response to a particular dfUg. orryt^orfrH^ased risk of adverse Testing to ^individuals at future risk for hgrtrtsd^ardiabetes or cancer. Indudes j-'y. t[f ;dtecus^ri>art;iif a testing panel lv h/: f 'V'1 f* ; $ Included :
Test to evaluate prognosis Testing to evaluate the likely outcome or course of a disease, particularly cancers Excluded
22 This table was adapted from: Secretarys Advisory Committee on Genetic Testing (2008). U.S.
System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and
Human Services http:/ www4.od.nih.gov oba sacghs/reports/SACGHS oversight report.pdf.
Accessed on May 8, 2008.
70


My analysis only included text-based media unless transcripts were
available from major radio or television sources (i.e. NPR, NBC Nightly
News). Only the text of the news stories as well as only the transcription text
of the television or radio stories was analyzed, not visuals. There is some
data to suggest that the visuals in genetic risk stories on the television do not
reiterate the factual genetic information and therefore could not assist the
viewer in making decisions based on the visuals in the story (Cappella et al.,
2007). Finally, television and radio transcripts with undecipherable content
due to poor or electronic transcription processes were also manually excluded
from the final dataset.
Data Analysis for Salience and the Media Agenda
The final selection of stories to be analyzed was imported into a
database and coded utilizing the qualitative analysis software, Atlas.ti (GmbH,
Berlin www.Atlasti.com). Using the story as the unit of analysis, each story
was coded for media date, type, source, main topic (salience), and valence
(positive, negative, or neutral) towards the issue of DTC genetics (agenda). I
also coded journalistic tools, such as fear appeals, human interest angles,
and the re-reporting of the same article across multiple media outlets. Coding
was conducted by me and a study team with experience in conducting
qualitative analysis and coding.
Data Analysis for Media Framing
To more fully examine the media discourse for evidence of journalistic
social space and symbolic space (the social space or bias of the journalists
and journalistic outlets creating the messages), and symbolic power (the use
of metaphors and catchphrases to package the issue and legitimize players),
texts were next coded for media framing of the issue. Only primary and
71


secondary frames were coded for each story. As with the main topic and
valence, the story was considered as the unit of analysis. Most stories had a
very clear overall frame. If experiential knowledge of the topic is limited
among the general public, it is also more likely that people in the general
population would respond to the overall frame and valence of the media
presentation as opposed to the subtleties of multiple frames within a
presentation.
Codebook Development
A codebook for headline and story body-text valence was developed a
priori to describe positive, negative, and neutral valence towards the issue of
DTC genetics. The codebook for media frames was developed a priori by me
from a review of the literature for previously identified frames in media
analyses of genetics information. These frames were classified based on the
theory elements of this study (critical theory, agenda-setting, and framing).
Testing of each codebook (valence codebook and frame codebook)
was conducted by three coders (me and two additional team members
experienced in qualitative analysis) reviewing and assigning codes to the
same ten media spots independently then resolving any differences by
consensus.23 De novo codes were added if needed after each round of
coding. Additional groups of ten stories were coded by the three coders
utilizing consensus method for differing codes until the codebook was static
and all coders were consistent in coding (Krueger RA & Casey MA, 2009).
Once consistency was reached, each coder independently coded an
assigned number of stories. Questionable passages were brought to the
group for discussion as necessary.
23 The specifics of the coding process (e.g. how many revisions of the codebook it took to reach
consistency and interrater reliability) varied between the coding for valence and the coding for frames.
Therefore, the specifics related to these issues are detailed in the results section prior to the coding
results from each codebook to avoid confusion.
72


Media Analysis Results
Media Sample Characteristics
The LexisNexis search over the 2 year time period after manual
exclusions as described in the methods section resulted in a final dataset of
388 media stories for analysis. Most stories were from newswire (40%), blog
(18%), newspaper (15%), or television and radio sources (12% combined)
(Table 4.2).
Table 4.2 Distribution of media sources
Mectfi Source ^ Total Count (%)
Newswire 154 (40%)
Blog 68 (18%)
Newspaper 60 (15%)
V -'7' V*-' t&ffert - V
Television Transcript 31 (8%)
National Network/Cable (N=26) Local Television (N*5) ''
Radio Transcript (NPR) 16 (4%)
Online Publication 27 (7%)
Magazine 17 (4%)
Other (abstract/newsletter/ reference) 15 (4%)
In addition to sources of stories in the mass media, I coded journalistic
tools such as conflict, human interest angles, and fear appeals to illustrate the
social space or habitus of the journalists presenting the information. Stories
published multiple times across multiple media types and sources were not
73


excluded as duplicate articles, but coded as a journalistic tool to represent the
media habitus in the promoting of their own agenda of the issue or of
promoting the agenda as directed by the agents directing stories to the
journalists. Table 4.3 shows that fully half of the journalistic tools utilized
were the repeated stories representing the media habitus of either
repackaging the same story multiple times or of the organizations and policy
makers directing the media by sending the same message through multiple
sources to increase the salience of the issue for the general public.
Table 4.3 Utilization of journalistic tools
To# * Definition Total (%)
: . Itefla Hdflu. : Seemingly duplicate stories. These are stories that are present in multiple sources either in part or in full. The multiple presentations may be due to the journalists choosing to repeat the same story or the organization/policy makers sending the same story through multiple sources to the consumer in order to promote thier 115(50%)
Human Interest i ii 11 yj- >* ;: Conflict T :7' Emphasizes conflict between individuals,groups, institutions or countries, uses terms like "war "conflict." May also use general terms such as "critics worry, and "proponents believe" 47 (21%)
Appeal Fear of disease, fear of cancer, fear of outcome. The story offers genetic testing as the cure for that fear. 5 (2%)
The journalistic tool of conflict (20% of tools) was utilized two different
ways in this dataset. In stories about genetic testing or DTC testing issues
and problems, conflict was utilized to illuminate the battle between the
scientific/medical community and the DTC industry.
74


The New York State Department of Health issued similar
notices to nearly two dozen testing companies in April.
The crackdowns follow the launch of a batch of new DNA
analysis services spawned by recent genetic discoveries. The
mostly Web-based services will scan customers' genes to spot
potential health risks, from cancer to lower back pain.
3:369(Conflict)
Alternatively, conflict was also used in human interest stories about
disease. In the latter case, the conflict is the powerful image of the individual
in the story battling the disease, in which case genetic testing becomes a
weapon with which to fight the battle.
Alzheimer's disease wreaks havoc on families. It did in my
family. And once you have seen it up close it haunts you
forever. What if DNA testing can tell you the risks that
Alzheimer's could become a part of your own life? Well, as
much as it may have frightened me, I was determined to take
that test.. .And it's a piece of information and I'll fight harder.
That's all. That's all we do....(Voiceover) Meryl will fight. That's
who she is. And the scientists will fight. It's a battle they know
they can win. We all have to fight to end the scourge of this
terrible disease, to take responsibility for our health and for each
other.
6:13(Conflict)
Journalistic tools also varied by media source (Table 4.3). The media
habitus of repeated stories (either by journalist design or by purposeful
direction from outside agents) occurred in all media types, but 72% of all
repeated stories were due to various newswire services sending out the same
story to be picked up by other sources. Human interest angles were utilized
mainly in newspaper and television sources (30% and 28% of all human
interest angles respectively). Conflict as a tool was used mainly in the
newspaper and newswire sources (30% and 23% of all conflict use). Fear
75


appeals were the least used tool in this sample of stories (2% of all tools) but
were found across multiple sources.
Table 4.4 Journalistic tools by media source
l#dla Source Media Habitus N (%) Human Interest N<%) v Conflict N(%) Fear Appeal N(%)
Newswire 82 (72%) 10 (16%) 11 (23%) 1 (20%)
Blog 5 (4%) 2 (3%) 6 (13%) 1 (20%)
Newspaper 5 (4%) 18 (30%) 14 (30%) 1 (20%)
Television T ranscript 5 (4%) 17 (28%) 9 (19%) 1 (20%)
Radio T ranscript (NPR) 2 (2%) 7 (11%) 0 (0%) 0 (0%)
Online Publication 6 (5%) 4 (7%) 5 (11%) 0 (0%)
Magazine 2 (2%) 3 (5%) 2 (4%) 1 (20%)
Other (abstract/ newsletter/ reference) 7 (6%) 0 (0%) 0 (0%) 0 (0%)
The distribution of mass media stories about DTC genetics also
showed only small differences variability over the two-year time period, with
the exception of April and May 2008, when the total number of stories jumped
almost 3 fold (Figure 4.1). This jump coincides with the signing into law of the
Genetic Information Non-Discrimination Act (GINA) 13 years after it was
introduced. Other significant events that also may have influenced the
distribution of stories and the salience of the issue in the mass media over
76


time are labeled in Figure 4.1 and include the launch of the BRACAnalysis
advertisement, and the launch of three DTC testing companies. Other
unanticipated events that occurred in this time period include Time Magazine
voting the at home DNA test Innovation of the Year for 2008, and the sending
of several cease and desist letters by the California government to several
DTC testing companies.
DTC Genetics in the Mass Media Over Time
Figure 4.1 Distribution of media stories over time
Issue Salience and the Media Agenda
The issue of DTC genetics is broad and includes related issues of
legislation, disease-risk testing, and the discovery of new genes the
development of new genetic tests for those genes. Therefore, the issue of
DTC genetics was not always directly identified in the media stories, but was
77


presented using other topics through which the broader issue could be more
easily interpreted by the public. Table 4.5 shows the eight main topics I
identified in the dataset through which the issue of DTC genetics was
presented.
78


Table 4.5 Main topics of stories presenting the issue of DTC genetics
Main Topic* Totals % of Total
6T/DTC issues / Problems 79 20%
DTC issues/prob 50 (63%)
Genetic Testing issues /Prob 22 (28%)
Decision making 7 (9%)
GINA: 76 20%
DTC Companies 51 13%
23andMe 22 (43%)
Navigenics 20 (39%)
DNADirect 3 (6%)
DeCode 4 (8%)
Knome 1 (2%)
Sciona 1 (2%)
New Gen** / New Genetic Test , 50 13% u.
Heart Disease 10 (20%)
Alzheimers 8 (16%)
Breast Cancer Risk 5 (10%)
Sports Aptitude 5 (10%)
Lung Cancer 4 (8%)
Hair Loss 3 (6%)
Smoking 3 (6%)
Weight management 3 (6%)
Arthritis 1 (2%)
Celiac Disease 1 (2%)
ET OH-dependence 1 (2%)
Matchmaking 1 (2%)
Migraine Headaches 1 (2%)
Monogamy 1 (2%)
Parkinsons Disease 1 (2%)
Vitamin Metabolism 1 (2%)
Ovarian Cancer 1 (2%)
Breast Cancer 44 11%
BRCA1/2 33 (75%)
Risk / Prevention 5 (11%)
Male Breast Cancer 3 (7%)
EARLY bill 3 (7%)
Disease Risk/ Prevention 34 9%
DTC and GT 30 (88%)
Family History 4 (12%)
Regulation 1 Oversight -. 32 8%
Other ? 6%
Alzheimers 5 (23%)
BRCA1/2 5 (23%)
Francis collins 3 (14%)
Genetic Counseling 3 (14%)
BRACAnalysis Ad 2 (9%)
Guidelines 1 (5%)
Full Genome Sequence 1 (5%)
Toxins 1 (5%)
Colon Cancer 1 (5%)
79


There were two topics that were used equally to present the issue of
DTC genetics in the mass media (20% each of all stories), Genetic
testing/DTC issues and problems and GINA. Genetic Testing/DTC Issues
and Problems designates stories which concern the benefits, limitations, or
other considerations for contemplating genetic testing in general or DTC
testing in particular. The problems, issues, and guidance for considering
testing did not differ whether the story concerned genetic testing in general
(28% of the stories in this topic), or DTC genetic testing specifically (63% of
the stories in this topic). GINA denotes articles that specifically concern the
Genetic Information Non-Discrimination Act (GINA). This bill had been
passed between the House and Senate for over a decade until it was finally
signed by the President on May 21, 2008. The purpose of the bill is to protect
individuals from health insurance or employment discrimination based on
genetic test information. Title I of the law relates to health coverage and was
to take effect between May, 2009 and May, 2010 in general. Title II of the law
was not to take effect until November, 2010 and pertains to employment.
However, regulation related to both titles was required to be in place by May,
2009 (DHHS GINA fact sheet
http://www.qenome.qov/Paqes/PolicvEthics/GeneticDiscrimination/GINAInfoD
oc.pdf. Accessed 9/14/2010).24
DTC Companies (13% of all stories) designates stories primarily about
a company providing DTC services. This topic concerns interviews with
company leaders, stories about one specific company, or firsthand accounts
from individuals about the genetic testing experience from one company. The
company discussed the most was 23andMe (43% of the category), followed
24 More information on GINA can be found at http://www.genome.gov/24519851. including a fact
sheet for researchers and health professionals.
80


closely by Navigenics (39% of the category). The other DTC companies
which comprise a substantially lower percentage of the category are
mentioned much more often in media stories than indicated by Table 4.3;
however, they are often named with other companies as a group and not the
sole topic of a story as often as 23andMe and Navigenics. In fact, 23andMe
appears throughout the data collection period and mostly in the mainstream
media (newswire, TV, magazines 86% of stories about 23andMe), while
60% of stories with Navigenics as the main topic occurred in April, 2008 when
the company debuted. Additionally, 45% of the stories about Navigenics are
from a single web blog source, while only 14% of stories about 23andMe
were from blogs (none of which included the blog reporting on Navigenics).
New gene/new genetic test (also 13% of all stories) designates stories
that concern a specific gene newly found to be associated with a disease or
condition, or a newly available test for a disease or condition, many of which
were explicitly stated as available directly to the consumer. Seventeen
different diseases or conditions were the topic of stories over the time period
studied; eight were for specific diseases and the remainder were for traits
ranging from monogamy (whether your mate is programmed to be faithful)
to weight management (designing a weight loss program based on genetic
profile). Heart disease and Alzheimers Disease were the two most common
diseases in these stories (20% and 16% of the category respectively). The
stories about new genetic tests for breast cancer risk (5 stories, 10% of
category) were not about BRCA1/2, but rather about a new test which looks
for common markers which may increase risk slightly over population risk.
Equally represented in this category with the test for breast cancer risk is a
genetic test for sports aptitude (5 stories, 10% of the category), which is a test
to help parents identify whether children will be successful in certain types of
81


sports. This test was developed and sold by a local company, but was
reported in the New York Times prior to being reported in the local media.
Breast cancer (11 % of all stories) designates stories where the issue of
DTC genetics is presented through the topic of breast cancer. These stories
usually concern breast cancer risk in general, and often mention BRCA1/2 as
part of the story, or the whole story may be about BRCA1/2 testing (75% of
the stories in this topic), but in relation to breast cancer. This code was also
used for stories that may appear to be about cancer in general from the
headline, but the story utilized facts, figures, and personal examples related
only to BRCA1/2 or breast cancer risk, screening, and prevention. Three
stories concerned male breast cancer and three concerned the EARLY Act
(Education and Awareness Requires Learning Young Act), a bill introduced to
congress in March 2009 requiring the CDC to create and conduct a national
education campaign about the threat of breast cancer to young women and
the availability of genetic testing (http://wassermanschultz.house.gov/earlvact/
accessed 9/25/2010)25.
The fewest stories related the issue of DTC genetics through the topics
of Disease risk and prevention (9% of all stories) and Regulation/Oversight
(8% of all stories). Disease risk and prevention designates stories that
concern disease risk and prevention as the main topic in relation to the issue
of DTC genetics. The majority (88%) of these stories discussed genetic
testing in general or DTC testing specifically as a tool for determining disease
25 The EARLY Act was introduced to congress in March, 2009 by Representative Debbie Wasserman
Schultz. The bill earmarks $9 million a year from 2010 2014 to the CDC to develop and implement
a national campaign to education young women (under age 40) about the risk of breast cancer. The
bill was passed as part of the Patient Protection and Affordable Care Act in March, 2010. Rep.
Wasserman Schultz introduced the bill after finding a lump in her breast around the age of 40, and
subsequently being diagnosed with breast cancer. She underwent bilateral mastectomy and
prophylactic oophorectomy after testing positive for a mutation in BRCA2
(http: // wassermanschultz. ho use, go v/earl vac t' accessed 9/25/2010).
82


risk or for personalizing prevention efforts. The remaining four stories in this
topic focused on family history as the tool for defining risk instead of or prior
to genetic testing. Regulation/oversight (also 8% of all stories) designates
stories that concern the need for stronger regulations and oversight of the
genetic testing industry in general and the DTC industry specifically. These
stories could concern regulation of DTC companies, but also concerned
stories calling for regulation of the laboratories contracted by the DTC
companies to conduct the tests, or of the genetic studies used to identify the
gene or gene-disease association which guide the testing offered by the
companies. However, stories that concerned regulation (or lack thereof) in
the industry as one of a number of issues and problems mentioned in the
story regarding DTC genetics were coded as the main topic GT/DTC issues
and problems because regulation/oversight alone was not the main focus of
the story.
Finally, 22 stories (6% overall) did not fit into any of the previous
categories. The stories about Alzheimers Disease and BRCA1/2 (22% each
of the category) are in this category because the Alzheimers stories in the
mass media reported research results from the REVEAL study, published in
the New England Journal of Medicine, and discussed the results that
individuals who chose to receive results about their risk for Alzheimers did
not suffer increased psychological harm (Green et al., 2009).26 This does not
fit with the main topic of new gene/genetic test in which 8 stories mentioned
newly available tests for the disease, or testing newly available through a
DTC company. Likewise, the stories about BRCA1/2 in this category focused
on the genes specifically, and included mass media stories about risks for
26 The REVEAL study was conducted on a clinical population of individuals at high risk for
Alzheimers Disease and randomized to receive APOE test results related to their risk of developing
the disease later in life. This is a randomized controlled trial of a very specific population of
individuals (Green et al., 2009).
83


ovarian cancer related to BRCA1/2 or the results of studies on gene mutation
prevalence in different race/ethnic populations. This is in contrast to the other
33 stories where breast cancer was the main topic used to present the
BRCA1/2 genes. The remaining 2 stories about BRCA1/2 were specifically
about Myriads BRACAnalysis advertisement and how a consumer should
respond to the advertisement or whether it was an acceptable advertisement
or not.27
To further illuminate salience over time of the issue of DTC genetics,
main topics were coded monthly to determine if the main topics used to
present the issue accounted for the changes in the distribution of stories seen
over time (Figure 4.2).
27 This main topic of BRCA1/2 indicates a difficult distinction in coding stories for main topic. Instead
of labeling any story talking about the genes as a main topic of BRCA1/2,1 made the decision to
distinguish BRCA1/2 as a sub-topic of breast cancer as that was how it was typically used in the stories
in this dataset; however, there were these few instances where the gene itself was the main topic of the
story hence these instances are coded as other.
84


601
Sep-Oct- Nov-Dec- Jan- Feb- Mar-Apr- May-Jun- Jul- Aug-Sep-Oct- Nov-Dec- Jan- Feb- Mar- Apr- May-Jun- JuF Aug-Sep-
07 07 07 07 08 08 08 08 08 08 08 08 08 08 08 08 09 09 09 09 09 09 09 09 09
Date
Figure 4.2 Distribution of main topics in the mass media over time
The issue of DTC genetics is presented to the public in the mass
media directly through the main topic DTC/GT Issues and Problems and
along with GINA was the most common topic overall. However, when
examined over time, stories with this main topic appear consistently every
month it is not usually the main topic through which the issue is presented to
the public in any given month. Likewise, the closely related topic of Disease
Risk/ Prevention (9% of all topics) is also used by the mass media nearly
every month to present the issue of DTC genetics, but is also not the most
common topic through which the issue is presented in any given month.
The main topics that dominate the media discourse as the vehicle for
presenting the issue to the public at any given time can be associated with
85


external events important to the issue. The Genetic Information and Non-
Discrimination Act (GINA) was signed into law in May, 2008. Stories on GINA
began appearing in February and March of that year, finally peaking in May at
seventy five percent (75%) of all stories during that month (Figure 4.2).
Additional stories concerning GINA are seen in February, April, and May,
2009 along with stories concerning regulation. According to the GINA law,
May, 2009 is when regulations related to specific parts of the law were
required to be defined and in place.
Two of the DTC testing companies, 23andme (Mountain View, CA) and
DeCode (Reykjavik, Iceland),28 emerged in November, 2007, but the main
topic in the media used to present the issue of DTC genetics at the time was
Regulation/Oversight (55% of all stories) rather than stories about the
companies themselves. The topic of Regulation/Oversight accounted for
sixty-four percent (64%) of all stories about DTC genetics in June, 2008,
possibly in response to the DTC testing companies, as the California
Department of Public Health sent cease and desist letters to thirteen DTC
testing companies in that month, most of which are based in California.
Stories about breast cancer are seen throughout the year, but the
proportion of stories around this main topic increased each October (43% of
all stories in October, 2008 and 30% of all stories in October, 2009), to
coincide with National Breast Cancer Awareness month. Also in October,
2008, Time Magazine named the at home genetic test its Innovation of the
Year (Hamilton, 2008), and accounted for most of the rest of the stories that
28 23andme can be found at www.23andme.com. One of the cofounders of 23andme is the wife of
Google co-founder Sergei Brin. The company received financial backing by Google and others in
May, 2007 and launched its DTC testing service on November 19, 2007. DeCODE genetics DTC
testing service website can be accessed at www.decodeme.com. The parent company, DeCODE
Genetics, is a population-based genomics company utilizing the unique characteristics of the Icelandic
population to explore common variations related to disease risk, and has been conducting research
since at least 1997. The company launched its DTC genetic testing service, DeCODEme.com, on
November 16, 2007.
86