Citation
Gift of self

Material Information

Title:
Gift of self determination of the role of rationality in organ donation
Creator:
Brassfield, Bette Simon
Publication Date:
Language:
English
Physical Description:
xiii, 277 leaves : ; 28 cm

Subjects

Subjects / Keywords:
Donation of organs, tissues, etc ( lcsh )
Practical reason ( lcsh )
Donation of organs, tissues, etc ( fast )
Practical reason ( fast )
Genre:
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Bibliography:
Includes bibliographical references (leaves 240-277).
General Note:
School of Public Affairs
Statement of Responsibility:
by Bette Simon Brassfield.

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:
166881874 ( OCLC )
ocn166881874
Classification:
LD1193.P86 2007d B72 ( lcc )

Full Text
GIFT OF SELF:
DETERMINATION OF THE ROLE OF RATIONALITY
IN ORGAN DONATION
by
Bette Simon Brassfield
B.S.N. California State University, Long Beach, 1976
M.P.A. University of Colorado, Colorado Springs, 1999
A dissertation submitted to the
University of Colorado at Denver and Health Sciences Center
in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
Public Affairs
2007


2007 by Bette Simon Brassfield
All rights reserved.


This thesis for the Doctor of Philosophy
degree by
Bette Simon Brassfield
has been approved
by
Peter deLeon
Linda deLeon
Date


Brassfield, Bette Simon (Ph.D., Graduate School of Public Affairs)
Gift of Self: Determination of the Role of Rationality in Organ Donation
Thesis directed by Professor Peter deLeon
ABSTRACT
The organ procurement and transplantation system in the U.S.
struggles with the social challenge of officially sanctioned and distinctively
personal gifting of donor organs. Because of an extraordinary mix of
technical advances and policy underpinned with ethical considerations
combined with the inadequate rate of commitment, a tremendous disparity in
donor organ need and availability exists today.
Conventional wisdom holds that altruism is central to donor intent
and is thus a focal point in donor awareness education. Altruism, however,
does not explain all behavior regarding donor intent as many individuals
either decide against, or make no decision, regarding donation. This
dissertation introduces an alternative rational approach in exploring the
perceptual justification in a decision regarding donor commitment in order to
provide a unique model for public education in donor awareness. A mixed
model of the rational choice perspective is applied to the explanatory factors
of self-interest, altruism, donor incentives, fairness in allocation, and
knowledge about the rules and regulations that govern donor behavior.


Research findings conclude that rationality, as it pertains to norm-based
preference-ordering, has a role in donor intent. However, the centrality of
altruism in organ donation should not be dismissed. Instead, the findings
suggest that we should continue to clarify the compelling forces in a decision
regarding donor intent.
If public education in donor awareness incorporates an assumption of
rationality, that is, that people are concerned about personal benefit in
beneficent action as a self-interested preference, a concern about equity and
fairness, or an interest in learning more about the donor system, these
explanatory factors can be nurtured and have the potential to positively affect
the rate of donor commitment.
This abstract accurately represents the contents of the candidates thesis.
I recommend its publication.
Signed
Peter deLeon


DEDICATION
With love and affection for my children, Ted and David,
My two treasures and my most endearing advocates.
And, for all the women in my family,
Those who have come before,
Those who are now,
And, those who will be.
If I am not for myself who will be for me?
And, if I am only for myself what am I?
Rabbi Hillel, 30 BC 9 AD


ACKNOWLEDGEMENT
It is a very good thing that I paid little heed to the intensity of time and effort
that would be required to complete this dissertation. In fact, the support and
encouragement of so many people made the time somewhat less significant and
the effort a lesson in persistence and dedication. First, my committee: Above
all others, my chair, Peter deLeon was wonderfully supportive; I remain in
awe of his ability to criticize and yet encourage not an easy feat. I am very
grateful to this sage and scholar for his willingness to be my guide in this
endeavor. Christine Martell insisted more than once that I could produce
a better product, and I did. Thank you for your resolve! Early on, Linda
deLeon said to me: Be relentless. I scribbled that little gem on a sticky
note and put it up on my computer monitor where it remains today. Her
words would draw me back to my work over and over again, but, more
importantly, they reminded me that Linda has an extraordinary ability to
instill in the unsuspecting both management skills and a healthy dose of
diligence necessary to complete a project of this magnitude. Mark
Yarborough provided much-appreciated information on ethics in organ
donation that helped me define my focus. Anne Kraetzer graciously ushered
me through the methodological maze. Thank you all, very much.
I especially want to thank Amy Kusek for her limitless help in compiling
information about donor awareness education, Roni White and Jan Welling at
the DMV for their assistance, Marsha Exley from Donor Alliance for her
enthusiasm, John Moyer for his thoughts on the organ donor process, and
Adrienne Casebeer for holding the lantern high. I was deeply moved by all
of you and your efforts in helping me move forward in this effort.
I hardly have the words to express my appreciation to the GSPA link-ettes,
Dawn Savage and Antoinette Sandoval, for their boundless encouragement
and assistance. You go, girls!
I very much appreciate the 2005 Council Award for Graduate School
Research, bestowed by the Graduate Council of the University of Colorado at
Denver and Health Sciences Center. This grant made it possible to conduct
the survey in an interview format and carry out a comprehensive analysis.
And, a very, very big thank you to my booster club, I will be forever
grateful to each of you for your help and encouragement along the way!


TABLE OF CONTENTS
Figures ................................................... x
Tables .................................................... xi
CHAPTER
1. INTRODUCTION ........................................... 1
Introduction ........................................ 1
The Gift Relationship.................................. 3
The Disparity Issue ................................... 6
Public Education ..................................... 12
Research Question..................................... 14
Overview ............................................. 15
Summary .............................................. 17
2. A RETROSPECTIVE ASSESSMENT OF ORGAN
DONATION AND ITS PUBLIC POLICY .......................... 19
Introduction ......................................... 19
The Evolution of Transplantation ..................... 20
Fantasy, Myths and Miracles ....................... 20
Earliest Transplantation Efforts .................. 23
A Time of Rejection ........................... 24
A Time of Redemption .......................... 25
Voluntary Donation ................................ 26
A Symbiosis: Grave Robbing and Autopsies ...... 26
A Paradigm Shift: Benthams Gift............... 28
A High Ideal: The Anti-Slavery Amendment ...... 29
Todays Transplantation Effort ....................... 30
The Pioneers ...................................... 30
The Consequences of Success ....................... 34
Industry Growth ................................... 36
Public Policy Implementation ......................... 39
Legislative Action ................................ 39
Federal Policy: End-Stage Renal Disease ....... 41
State Policy: Uniform Anatomical Gift Act ..... 43
viii


Federal Intervention ............................... 47
Federal Policy: National Organ Transplant Act ... 53
The Principles of Organ Donation ................... 57
Organs as Gifts ................................. 59
Organs as Goods ................................. 60
The Scope of the Federal Policy .................... 63
Organ Allocation ................................ 66
Organ Procurement ............................... 70
Commercial Model ............................. 72
Mandated Choice .............................. 75
Presumed Consent ............................. 76
Additional Legislative Actions ..................... 77
Commitment Challenge.................................... 79
Summary ................................................ 81
3. LITERATURE REVIEW ......................................... 82
Introduction ........................................... 82
Altruism ............................................... 84
Rational Choice Theory ................................. 89
Origins of RCT ..................................... 90
Classical Economics ................................ 91
Neo-Classical Economics: The Emergence of RCT ...... 93
The Assumptions of RCT ............................. 99
Core Assumptions of RCT ........................... 103
Utility Maximization ........................ 103
Structural Consistency of Preferences ........108
Decision Making Under Conditions
of Uncertainty .............................. 109
Centrality of the Individual ................ Ill
Supplementary Assumptions of RCT 112
Information Use and Gathering ............... 112
Nature and Content of Human Goals ........... 113
The Tempest in a Rational Choice Perspective......... 114
An Integrated Version of RCT .......................... 123
Policy Design ......................................... 126
Summary ............................................... 129


4. RESEARCH DESIGN AND METHODOLOGY .......................... 133
Introduction .......................................... 133
Basis for Hypotheses .................................. 134
Methodological Formulation............................. 137
Hypotheses ......................................... 137
Self-Interest ................................ 138
Altruism ..................................... 140
Incentives ................................... 141
Fairness ..................................... 143
Knowledge .................................... 145
Analytic Technique .................................... 147
Testing Instrument ................................. 147
Study Population and Study Location ................ 154
Mode of Measurement ................................ 155
Sample Size ........................................ 158
Validity and Reliability ........................... 160
Human Subjects Approval ............................ 162
Summary ............................................... 163
5. RESULTS AND ANALYSIS...................................... 165
Introduction .......................................... 165
Descriptive Statistics ................................ 165
Control Variables .................................. 165
Age .......................................... 165
Education and Income.......................... 166
Ethnicity .................................... 167
Volunteerism ................................. 168
Opinion of Organ Donation .................... 170
Concerns About Organ Donation ................ 170
Dependent Variable ................................. 171
Organ Donor Indicated on Drivers License .... 171
Deceased Donor ............................... 172
Living Donor ................................. 174
Independent Variables .............................. 176
Self-Interest ................................ 178
Altruism ..................................... 178
Incentives ................................... 179
Fairness ..................................... 180
Knowledge .................................... 180
x


Correlation Matrix .................................. 182
Multiple Regression ................................. 187
Organ Donor Indicated on Drivers License ........ 187
Deceased Donor ................................... 188
Living Donor/Family .............................. 189
Living Donor/Friend .............................. 190
Living Donor/Stranger ............................ 191
Summary ............................................. 192
6. CONCLUSION............................................... 196
Introduction ........................................ 196
Discussion .......................................... 196
Self-Interest .................................... 199
Altruism ......................................... 200
Incentives ....................................... 202
Fairness ......................................... 204
Knowledge ........................................ 206
Summary .......................................... 207
Implications of Research ............................ 208
Theoretical Implications ......................... 210
Policy Implications .............................. 215
Research Limitations ................................ 219
Future Research ..................................... 221
Conclusion .......................................... 224
APPENDIX A: Survey ........................................ 227
APPENDIX B: Survey Key .................................... 237
APPENDIX C: Glossary of Acronyms .......................... 239
REFERENCES .................................................... 240
Works Cited ............................................... 240
Interviews ................................................ 277
I
XI


LIST OF FIGURES
Figure
1.1 Donor Organ Availability-Need Disparity .................... 7
2.1 Multi-Sector Involvement in Organ Donation ................... 60
2.2 Private Good/Public Good Migration of Donor Organs ........... 62
2.3 UNOS Regional Map ............................................ 67
5.1 Voluntary Donor Frequency ................................... 169
5.2 A Comparison of Money Donors and Organ Donors................ 169
5.3 A Comparison of Time Donors and Organ Donors ................ 170
5.4 Organ Donor Indicated on Drivers License ................... 172
5.5 Willingness to be Organ Donor at Death ...................... 173
5.6 Living Donor/Family ......................................... 175
5.7 Living Donor/Friend ......................................... 175
5.8 Living Donor/Stranger ....................................... 176


LIST OF TABLES
Table
1.1 Organ/candidate waitlist, December 2006 ..................... 8
3.1 Variation of premises in narrow and wide versions of RCT ........ 102
5.1 Frequency of education milestones ............................... 166
5.2 Income distribution frequency ................................... 167
5.3 Ethnic distribution ............................................. 168
5.4 Survey response frequencies (N = 140) ........................... 177
5.5 Correlation matrix: Donor intent and independent variables .... 185
5.6 Multiple regression model (DV: OD indicated on DL) .............. 187
5.7 Multiple regression model (DV: Deceased donor)................... 188
5.8 Multiple regression model (DV: Living donor/Family) ............. 189
5.9 Multiple regression model (DV: Living donor/Friend) ............. 190
5.10 Multiple regression model (DV: Living donor/Stranger) ........... 191
5.11 Overview of hypothesis testing for donor intent ................. 194


CHAPTER 1
INTRODUCTION
Introduction
In the United States, human organ transplantation occurs through an
extraordinary mix of technical marvels, ethical considerations, public policy,
legal sanctions, a unique economic base, public support, and individual
commitment. The remarkable procedural outcomes require highly-regulated
collaborative efforts by a number of multi-sector entities and institutions, yet
are achieved solely because of distinctively personal gift-giving the
beneficent donation of a life-saving organ from one individual to another.
The sale or purchase of human organs is forbidden by law in the
United States and, indeed, throughout the western world (Senate Report 98-
382, 1984); the gift of self must be a voluntary contribution, or it may not
occur. In The Most Useful Gift, Prottas (1994, 157) observes:
...all [human] organs are obtained as gifts, and by laws
strongly consistent with public preference, these are
free and voluntary donations, altruistically motivated.
Public policy must therefore reflect the unique status of
transplantation as an area of high-tech medicine unlike
any other. Only in transplantation is fostering altruism
a necessary part of public policy.
1


The public policy directive for individual choice in voluntary organ
donation became formalized through two important legislative actions the
1967 Uniform Anatomical Gift Act (UAGA) and the 1984 National Organ
and Transplant Act (NOTA). Taken together, these laws are intended to
provide maximum benefit in transplantation and encourage organ donation
within ethical parameters that stress the dignity and integrity of a human body.
UAGA recognizes the right of the individual to decide whether to
become an organ donor (Price, 2000; Prottas, 1994; Cate, 1994; Caplan, 1987;
Featherstone, 1971). This legislation was drafted in 1967 by the National
Conference of Commissioners on Uniform State Laws1 (Spielman, 1996;
Prottas, 1994; Sadler et al., 1969a, b), and, by 1973, was enacted in each state
and district of the country (Kaserman & Barnett, 2002; Spielman, 1996). A
1987 amendment further provides that donor intent as indicated on a state
drivers license, state identification card, or organ donor card is legally
binding (Spielman, 1996; Kessinger, 1990).
NOTA, an amendment to the Public Health Service Act (PL 98-507,
42 U.S.C. 273), is the universal framework for a nationwide procurement and
1 Originally founded in 1892 by seven representative states, the National Law Conference is
now a 300-member assembly of lawyers, judges, and professors of law representing each of
the nations states and districts (Spielman, 1996). The Conference provides universal clarity
and stability in critical areas of the law by drafting legislation that supports the federal
system and facilitates consistency from state to state (www.nccusl.org).
2


allocation system. NOTA designates human donor organs as a public trust,
or public resource, and forbids the buying and selling of human organs
(Prottas, 1994). This edict places the federal government clearly behind a
procurement system based on volunteerism and mandates an allocation
system based on equity and fairness (Senate Report 98-382, 1984).
The Gift Relationship
Organ transplantation is a surgical operation where a failing or
damaged vital, solid organ in the body (e.g., heart, lung, liver, pancreas,
intestine, or kidney) is removed and replaced with a new (albeit used) one.
All organs perform specific functions in the body, but a vital, solid organ
cannot be removed without loss of function necessary to support life.2 3
The human body is also made up of replenishable, or regenerative,
-5
organs, tissue and cells. Human blood is a familiar example of a commonly
donated regenerative organ (Banks, 1995). Richard Titmuss grappled with
the issue of whether this resource should be gifted or sold in The Gift
Relationship (1971). Targeting the panoply of ethical implications in his
2 Exceptions are one of a pair of healthy kidneys or a section of a liver or lung, each of which
is considered non-vital to a living donor but vital to an organ recipient.
3 Regenerative and nonregenerative organs and tissue are distinguished by the manner of
transaction permitted under law in the transfer between donor and recipient. Current laws
permit both the donation and the sale of regenerative tissue including skin, blood, hair,
sperm, ovum, stem cells, and bone, but prohibit the sale of nonregenerative solid organs such
as the heart, lungs, liver, and kidneys (Banks, 1995).
3


discussion of the selling versus the giving of body parts, Titmuss asked the
question: To what extent can we and to what extent should we rely on a
gift relationship to provide resources for those in need (Schwartz, 1999). His
conclusion was that both the quality of the blood procured and the quality of
the society in which it is procured are enhanced by treating blood as a gift
rather than a commodity (Prottas, 1994; Titmuss, 1971).
This critique moved beyond the transactional characteristics of human
blood by asking: If donor blood were to be sanctioned as something to be
bought and sold, would it not then justify private markets in other areas of
healthcare or social welfare? A decade before federal policy established
transactional standards for human donor organs, Titmuss, quite presciently,
raised the concern that if blood could be sold for money, then human organs
may also come to be treated as commodities to be bought and sold
(Casebeer, 2002, 2, citing Titmuss, 1971, 216; see also, Schwartz, 1999).
The analogy between blood and organs lies in the ethical issues of
procuring medically necessary resources through donation (Prottas, 1994).
Unlike donor blood, however, donor organs are distinguishable because they
are not a renewable resource. Organ transplantation is unique in its
dependence on a [resource] that cannot be manufactured or replicated, the
supply of which is beyond the ken of the medical system and largely outside
the boundaries of the market system (Prottas, 1994, 157).
4


In the 1970s, as transplantation surgery rapidly moved toward
becoming a standard form of treatment for end-stage diseases, that is to say
when more conservative, non-surgical approaches are no longer practical, the
procedure became a focus of ethically-charged concerns related to health and
social welfare issues, including questions about who could donate, who
would receive, when were donations possible and transplantations feasible,
and the appropriateness of donor compensation.
The ensuing discourse on the social and political obligations of organ
procurement and transplantation involved numerous politicians, economists,
ethicists, theologians, legal scholars, medical professionals, healthcare
administrators, and, importantly, the public (Kaserman & Barnett, 2002;
Pellegrino, 1991; Arrow, 1975; Upton, 1973). Titmuss treatise, which
defined the transactional characteristics of a human bodys resources,
provided a necessary cache of wisdom for these discussions. In time, the
discourse would lead to public policy that distinguishes human donor organs
as incomparably private and public goods. In effect, the gift relationship
between donor and recipient in organ transplantation became institutionalized
through the design and implementation of both NOTA and UAGA (Johnson,
et al., 1996; Cowan, et. al, 1987).
5


The Disparity Issue
The organ transplantation system struggles with the social challenge
of organ gifting or officially sanctioned altruism (Youngner, et al., 2004,
131). Today, transplantation is standard surgical treatment for end-stage
diseases; in addition, the numbers and types of transplants performed have
multiplied since the initial successes. In a word, the demand for donor organs
has exploded (UNOS, 2004a) but the supply has not or could not grow
at the same rate (Youngner, et al., 2004, 126). As a result, a tremendous
disparity exists between need and availability of human donor organs.
By the mid-1970s, the first signs of a disparity in need and availability
of donor organs were apparent. Until then, most transplants resulted from
living donations between family members. Any other exchange had a high
risk of failure because the immune system of the recipient rejects a foreign
donor organ. The emergence of immuno-suppressant drugs made it possible
to transplant organs from unrelated living donors or from deceased donors.
Because of this, the number of procedures increased and the number of
doctors who performed transplants increased as well. Medicare, the federal
health insurance program, began reimbursing the cost of kidney transplants
during this time, and, following its lead, private insurance also began to offer
coverage for transplantation. These occurrences dramatically increased the
number of transplant surgeries which organ procurement was hard pressed to
6


match; the discrepancy that resulted from this early surge of activity would
continue to grow into an imbalance of staggering proportions today. Over the
past three decades, a seemingly exponential increase in donor organ need has
far outpaced availability. Figure 1.1, below, cogently shows that organ
donation, though significant, is insufficient when compared to need.
1987
1992
1995
1998 2001
2004
I Donors Organs Waitlist
Figure 1.1 Donor Organ Need-Availability Disparity (TJNOS. 2004)
The graph indicates that by 1987, the number of candidates clearly
had surpassed the number of available donor organs. In 2004, when the
waitlist had climbed to 87,286, a total of 25,037 transplants were performed
with donor organs procured from 7005 cadaveric donors and 7151 living
7


donors (National Kidney Foundation, 2005).4 By October 2005, the number
of waitlisted candidates had risen higher than 90,000 (UNOS, 2006).
Disparity affects transplantation efficacy by constraining the number
of procedures this has a particularly dismal consequence for the candidates
who are waitlisted for these life-saving organs (Kaserman & Barnett, 2002;
Barnett, et al., 1998; Jarvis, 1998). Table 1.1 shows the number and type of
organs that were needed by the end of 2006 (OPTN, 2006a).
Table 1.1
Organ/candidate waitlist. December 2006
Tvpe of Organ Candidates
Kidney 68,604
Liver 16,748
Pancreas 1,766
Kidney/Pancreas 2,394
Heart 2,646
Lung 2,379
Heart/Lung 140
Intestine 237
Total 94,914
4 The first successful transplants beginning in the 1950s involved living donors (Tilney,
2003; Cooper, 1987). The introduction of anti-rejection drugs in the 1970s made routine use
of organs from deceased donors although living donations continued in small numbers,
(Daar, 1997; Levey, et al., 1986). As part of an ongoing effort to increase donor rates, living
donations began to increase in the 1990s (NOTI, 1997). Although we should be mindful that
only specific organs can be donated by living donors, these gifts are of utmost importance in
the total transplantation count.
8


Clearly, not everyone who needs an organ transplant gets one and, in
fact, the scales tip quite heavily in the opposite direction (UNOS, 2006):
On average, 106 people are added to the nations
organ transplant waitlist each day one every 13
minutes.
On average, 68 people receive transplants every
day from either a living or deceased donor one
every 21 minutes.
On average, 17 people die each day while
waiting for a donor organ one person every 85
minutes.
In 2005, over 6000 potential recipients died
waiting for a donor organ.
Some observers argue that sufficient numbers of donor organs are
available and it is simply a matter of changing the method of procurement to
meet the demand (Kaserman & Barnett, 2002; Sanders, et al., 1992). Pointing
to the existing disparity in need and availability and arguing that the disparity
reflects the limitations of the current donor model of assisted volunteerism,
these critics have proposed alternative methods of procurement, most
commonly, commodification, presumed consent, and mandated choice (de
Castro, 2003; Kaserman & Barnett, 2002; Joralemon, 2001; Kurnit, 1994;
Veatch, 1991a; Caplan & Welvang, 1989). Each of these methods is heralded
by some and criticized by others; each has the potential for increasing
9


procurement numbers; however, unlike the assisted volunteerism model, all
are counterintuitive to our societys core values.
Since the 1980s, public polls indicate strong public support for the
concept of organ donation but lower rates for commitment. The earliest polls
showed that the majority of Americans approved of the concept but less than a
third would choose to become an organ donor (Prottas, 1994; Gallup, 1993,
1985). By the year 2000, polls continued to indicate strong approval of organ
donation (85%), but less than half of those individuals expressed a willingness
to commit to organ donation (Cosse & Weisenberger, 2000; Partnership,
2000). A more recent poll indicated that nine out of every ten adults in the
U.S. support organ donation but just over half of those individuals would
indicate their decision to be an organ donor on a drivers license or donor card
(Gallup, 2004). The bottom line is that public support is high but commitment
rates continue to lag behind. Significantly, and for a variety of reasons
including medical or social circumstances, very few of those who do commit
will actually become organ donors (White Paper, 2004).
Previous studies suggest the commonality of altruism among those who
commit to organ donation frequently choosing to be donors in order to help
others and believing that something good will result (Childress, 2003;
Siminoff, et al., 2001; Prottas, 1994; Tymstra, et al., 1992; Gallup, 1993, 1985;
Benjamin, 1989; Battan & Prottas, 1987). An observation by Prottas (1994,
\
10


50) that personal willingness to donate ones own organs tells us something
about an individuals kindness reflects the widely held belief that organ
donation, above all else, is an altruistic act.
Altruism, however, may oversimplify the action. Personal benefit for
the donor would seem to matter to a degree why else do so many individuals
choose not to be organ donors? It could be argued that these same studies point
to this paradox by indicating that those who choose not to commit to organ
donation give self-oriented rather than other-oriented reasons some indicate
they do not trust the system, others believe family members would object,
and still others do not want to be disfigured or want their bodies to remain
whole at death, the latter being a reflection of certain cultural and religious
beliefs (Siminoff, et al., 2001; Partnership, 2000; Prottas, 1994; Tymstra, et al.,
1992; Gallup, 1993, 1985; Benjamin, 1989; Battan & Prottas, 1987). In
addition, these studies generally count those individuals who are undecided
about donor commitment among those who choose not to commit.
If the organ donor model of assisted volunteerism is to be efficacious,
such that supply increasingly meets demand, it is essential that more people
make a commitment to organ donation. Any degree of change in a decision to
commit by any number of individuals would be encouraging news in the
transplantation effort. How to positively affect donor commitment and
potentially effect an increase in donor rates is at the heart of this dissertation.
11


Public Education
In its entirety, the transplant community strives to promote public
support and commitment to organ donation, but one particular organization
has this as its mission. The aptly named Donor Awareness Council (DAC) is
a nonprofit agency found in urban areas across the country; these agencies are
affiliated under an umbrella organization, the national Coalition on Donation
(COD), and, in general, are funded by state monies, and their boards of
directors include representatives of regional transplant centers and
procurement agencies. The principle objective for a DAC is to effectively
increase the number of individuals who commit to organ donation within its
particular service region. In order to achieve this objective, the agencys
public education activities promote community involvement (Donor, 2005,
1999; Kusek, personal interview, October 16, 2003; Murphy, personal
interview, October 16, 2003). Various DAC activities include community
events designed to increase donor awareness such as fun runs, annual poster
contests, presentations at health fairs, informational displays at drivers
license offices, and a Donor Sabbath event each November when faith
communities are encouraged to discuss organ donation (Donor, 2005, 1999).
Three years ago, the COD conducted focus group studies in three areas
of the country targeting commitment issues among individuals who are
undecided about organ donation (Coalition, 2003). The results from each of
12


the focus groups were remarkably similar in sum, altruism matters, as does
personal benefit for the donor. Other information indicated that indecisiveness
about donor intent might be due to uncertainty about certain issues such as
donor incentives, fairness in allocation, and an understanding about the rules
and regulations that govern the donor process.
The results of the COD study suggest that ad hoc reliance on an
altruism-based donor education model excludes other considerations that may
be equally important in a decision regarding commitment to organ donation.
For the purpose of this dissertation, personal benefit, or self-interest, the
concerns about donor incentives, fairness in allocation, and understanding the
rules and regulations that govern the donor process, are seen as perceptions
that may justify a commitment decision, that is, the objective or subjective
elements that may explain a decision to act. Because the rate of donor
commitment is a reflection of satisfactory donor awareness education (Ethics,
2004; Veatch, 2000; Caplan & Coelho, 1998), this research determines the
empirically significant relationships between donor intent and the role of self-
interest, the role of altruism, the importance of donor incentives, a sense of
fairness in allocation, and the consequence of knowledge, or an understanding
of the rules and regulations that govern organ donation. The information
drawn from this research is intended to provide an alternative model of donor
commitment for public education efforts in donor awareness.
13


Research Question
The goal of transplantation policy is to achieve maximum benefit, that
is, to provide the best possible results for the greatest number of people within
a framework of equity and fairness. Attainment of this goal not only relies on
individual commitment but on public support. As with other socially
responsible actions, organ donation, or the gift of self, simply cannot be
addressed in a social vacuum (Burdick, 1999; Benjamin, 1989; Dery, 1984).
Rochefort and Cobb (1994, 57) observe: There are divergent perceptions of
any problems origins and impact as well as significance within the societal
context. Thus, the two-fold research question addresses 1) at the individual
level, perceptual justification in a decision regarding commitment to organ
donation and 2) at the policy level, the significance of individual perceptual
justification in donor awareness education. Hence,
What perceptual justification do individuals adopt
in a decision regarding commitment to organ donation?
and
Does an alternative approach to donor awareness education
augment existing public education policy?
14


Answers to this dual query are explored in the following chapters
which begin with a retrospective assessment of organ procurement and
transplantation, followed by the application of a rational choice theoretical
perspective to research design and methodological formulation, an analysis of
results, and an interpretative discussion. The specific plan for addressing the
research question is outlined below.
Overview
The accepted practices of donor organ procurement and
transplantation in this country are influenced heavily by historical points of
reference. Thus, Chapter Two, A Retrospective Assessment of Organ
Donation and Its Public Policy, offers an overview of the origins of social
attitudes and customs that can be linked to current policies.
In addition, the transactional characteristics of human donor organs
are defined and the social, ethical and political rationale for extant public
policy is discussed. The existing donor model is compared to three
alternative models that theoretically breach the margins of volunteerism but
are frequently held up by critics of the volunteer model as panaceas for the
disparity issue of donor-organ need and availability.
In sum, this chapter offers insight into the extant donor model. In
addition, it establishes the raison detre of this dissertation which is to
15


determine perceptual justification for organ donation beyond the sphere of
altruism, that is, other factors that may explain a decision regarding organ
donation, so as to develop a better understanding of individual choice and
provide an alternative frame by which donor education can be examined.
Chapter Three, Literature Review, provides an overview of the
behavioral element of altruism to evince an understanding of its relationship
with donor commitment. Rational choice theory (RCT) is introduced as an
alternative approach to examine donor commitment issues. Beginning with
pre-classical utilitarian thinking on rational action, the development of a neo-
classical economic theory of rational choice and its assumptions are
presented. The discord challenging traditional rational choice theory and
subsequent variations provides the necessary backdrop for a critique of the
approachs adaptive capabilities. Particular emphasis is given to narrow
and wide versions of the approach and to fresh theoretical thinking on
interpretative rationality in explaining behavioral action. An integrated
model is introduced that combines the assumptions of both the narrow and
wide versions with an interpretative perspective for the purpose of examining
the issue of donor intent.
Next, the significance of public in public policy for procurement
and transplantation is discussed. And, in conclusion, the capability of RCT
as a theoretical approach for an examination of the perceptual justification
16


adopted in a decision regarding organ donation and its relevancy to donor-
awareness education policy is summarized.
Chapter Four, Methodology, presents the basis for the research
design, the hypotheses, and the methodological approach to testing the
hypotheses. The research question is addressed with a survey questionnaire.
This test instrument is designed to determine the explanatory factors in a
decision regarding organ donation, specifically, the role of altruism, the role
of self-interest, and the importance of donor incentives, fairness in allocation,
and knowledge about the rules and regulations that govern organ donation.
Chapter Five, Results and Analysis, provides an analysis of the survey
response data. Chapter Six, Conclusion, offers an interpretive discussion of
these findings in relation to the theoretical perspective of rational choice.
Limitations of the study are detailed and, lastly, topics for future research are
explored.
Summary
The purpose of this dissertation is to provide a better understanding of
individual choice in a decision regarding commitment to organ donation.
The disparity in donor organ need and availability raises concerns about the
adequacy of current altruism-based assumptions about voluntary donor
commitment. These assumptions affect the efficacy of donor awareness
17


education as what is thought to justify individual decision-making regarding
organ donation is central to public education design. A rational choice
approach to an examination of the perceptual justification that an individual
adopts in a decision regarding commitment to organ donation, that is, the
objective or subjective explanatory factors in a decision to act, may provide
an alternative model of communication in public education, thus addressing
the issue of efficacy by potentially affecting the rate of donor commitment.
18


CHAPTER 2
A RETROSPECTIVE ASSESSMENT OF ORGAN DONATION
AND ITS PUBLIC POLICY
Introduction
Federal and state public policies deal with the issues of procurement
and allocation in organ transplantation. The social, political, legal and ethical
parameters of these policies derive from democratic principles of equality,
justice and respect for autonomy (Kluge, 1989). The federal policy NOTA
addresses the unique transactional characteristics of human donor organs and
the processes of procurement and allocation. The intent of this policy is to
provide maximum benefit through procedures that are both fair and equitable
(Veatch, 2000, 1991b; UNOS, 1994; Jennings, 1993). UAGA, by
comparison, is a state-based policy that maintains a certain equilibrium in the
procurement process by addressing the right of individual autonomy, or, the
right to choose, in organ donation (Prottas, 1994).
The scope of organ transplantation has increased in size and
sophistication over the past fifty years since the early experimental stages to
present day highly successful procedures. Beginning with the first successful
19


kidney transplant in 1954, transplantation has mushroomed into an industry-
driven enterprise bringing about fierce competition between facilities and
potential recipients while the availability of donor organs for these transplant
procedures lags far behind the need (see Figure 1.1). As a result, the donor
organ has become a scarce resource. Public policies provide the framework
for the legal guidelines that protect individual donors and their organs
through the ethically-bound passage of that scarce resource from benefactor
to recipient.
To better understand the effect of public policy on organ procurement
and transplantation and the significance of public support and individual
donor choice, it is first necessary to retrace the centuries-old origins and
development of transplantation, and explore the miracle of modern surgical
transplant technology in its social, political, legal and ethical framework.
The Evolution of Transplantation
Fantasy. Myths and Miracles
Although the history of modern transplant surgery is relatively short,
the concept has been fueled since ancient times (Tilney, 2003). Barnard
(1967, 1271) observes, The dream of the ancients from time immemorial has
been the junction of portions of different individuals, not only to counteract
disease, but also to combine the potentials of different species.
20


Fantasy and myth in the arts, literature, and religion present the vision
of mythical creatures, some evil, some not, but all of which purported to have
had superior capabilities beyond the power of a single species (Tilney, 2003;
Nelkin & Andrews, 1998; Ktiss & Bourget, 1992; Saunders, 1972; Barnard,
1967). Many ancient civilizations worshiped gods depicted as part human
and part animal including ancient Egypt which produced the Sphinx,
described by Sophocles as the hooked, taloned maid (Tilney, 2003, 4).
Ancient Greek mythology provides plentiful examples of creatures with
human and animal attributes satyrs and centaurs, such as the Minotaur, and
Medusa with her snake coiffure (Kiiss & Bourget, 1992). Other examples
include the Hindu god of wisdom, Ganesha, which bore an elephants head,
and Pan, described by Virgil, in ancient Rome, as a half-goat and half-boy
god (Saunders, 1972).
By the Middle Ages, sailors returning home after months at sea would
report sightings of sea creatures that were half-maiden, half-fish; at the same
time, religious art began to portray a Dante-esque vision of Hell the Devil
himself became a being with horns and a tail (Tilney, 2003; Nelkin &
Andrews, 1998; Russell, 1992). A 14th century Benedictine monk and
cartographer, Ranulf Higden, peopled his map of the mysterious continent of
Africa with one-eyed denizens whose outsized feet covered their heads
(Tilney, 2003, 5). A century later, the Flemish painter, Hieronymous Bosch,
21


depicted the damned as anthropomorphic rats with faces disfigured by beaks
or other animal features (Tilney, 2003; Gaunt, 1986).
In western civilization, beginning in the Middle Ages and for
centuries thereafter, the concept of surgical repair of human tissue yielded to
religious beliefs and legends; therapeutic replacement of body parts was
considered achievable only by a supernatural event through divine
intervention (Tilney, 2003; Bynum, 1995; Saunders, 1972). Christianity
provided ample examples of the miracles of Jesus which led to recounts of
other life-altering events through supernatural aid:
Christ restored the ear of a servant of the High Priest
after an angry Simon Peter had cut it off with a
sword. Having witnessed this event, Saint Peter was
then able to replace the breasts of Saint Agatha after a
Roman consul had removed them with tongs because
she repulsed his advances, and Saint Mark reattached
a soldiers hand that had been lost in battle. In the 4th
century, Pope Leo I amputated his own hand after
becoming sexually aroused when a woman kissed it;
the Virgin Mary restored it as a reward for resisting
further temptation. In the 12th century, Saint Anthony
of Padua reimplanted a leg after a young boy after
had cut it off in a fit of remorse for kicking his mother
(Tilney, 2003, 7).
In a less sacred tale, the 16th century physician-priest
Francois Rabelais told the story of the warrior
Epistemon who lost his head in a battle with giants
but had it surgically restored vein against vein,
sinew against sinew, and spondyl against spondyl
(Tilney, 2003, 9, 289, citing Works, 1921).
22


Countless folk stories and fairy tales carried on these thematic visions
- consider the electrically-vitalized monster in Mary Shelleys Frankenstein
(1996/1818) and the boy-puppet in Collodis Pinocchio (1991/1883) whose
physical features changed depending on his ability to tell the truth (Tilney,
2003). Contemporary literature and film continue to provide an imagery of
characters transformed by supernatural powers or fantastically created that
way familiar examples include J.R.R. Tolkiens depiction of Middle-Earth
in The Hobbit (1997/1937) and The Lord of the Rings (1991/1954-56) and
George Lucas Star Wars film trilogy (Pollock, 2005; Boa, 1989).
Earliest Recorded Transplantation Efforts
Tilney (2003, 10) observes, the reconstruction of injured or missing
body parts with living tissue did not lie totally within the realm of legends,
fantasies, and religious beliefs; it is likely, however, that these themes
triggered novel approaches to the practical treatment of the afflicted.
The earliest evidence of surgical transplantation was a bone
replacement procedure done in Greece during the Bronze Age in which a
circular disk of bone was removed from the skull of an individual to relieve
intracranial pressure and later replaced (Sharma & Unruh, 2004).
Accounts from Egypt, China, and India dating back many centuries
describe experimentation in tissue grafting (Tilney, 2003). Depictions on
23


ancient Egyptian papyri show skin transplantation techniques to cover large
and obvious areas of tissue loss. Indian treatises dating from 1000 B.C.E.
describe nose and ear reconstruction for individuals who had been wounded
in battle or mutilated as a punishment (Tewari & Shukla, 2005; Sharma &
Unruh, 2004; Tilney, 2003; Majno, 1975).
A Time of Rejection. Ancient literature on surgical tissue grafting
techniques was lost for centuries while the centers of medical learning shifted
from Egypt to Asia Minor and, finally, Europe (Tilney, 2003; Majno, 1975).
Surgery first fell into disfavor within the Arab nations because it required
unclean touching of the human body. Later, religious leaders in Europe
fostered the unpopularity of surgery intervention on the human body by
insisting that curative repairs of this magnitude necessitated divine
intervention to honor the church dictum, medical practitioners distanced
themselves from such matters (Tilney, 2003). For some time, surgical
activity fell into disfavor and was relegated to barbers, sheep gelders, bath
keepers, and itinerant journeymen (Tilney, 2003, 12).
During the Renaissance, European scholars rediscovered the long-
ignored literature on surgical transplant techniques and began to incorporate
this information with new discoveries in anatomy and physiology (Nelkin &
Andrews, 1998). Renewed interest coincided with two social phenomena
common to this era the use of swords in battles and a debilitating syphilis
24


endemic and resulted in a resurgence of surgical tissue transplantation.
Religious leaders were uncompromising, however, and continued to maintain
that these procedures were a departure from established norms and
interfered with the will of God (Tilney, 2003, 14). As a result, tissue
transplants were rarely performed, and then only surreptitiously, and
generally only for the rich who could afford to pay for the procedures.
Because of lack of endorsement by organized religion and rejection by the
medical profession, surgery for transformation and restorative purposes
would become a subject of social and literary satire for the next two
centuries, even as the practice of medicine was advancing (Tilney, 2003).
A Time of Redemption. Despite these beginnings, tissue grafting
techniques hold a critical place in the history of transplantation. By the late
19th century, the procedure was used more and more frequently in surgical
repairs (Tilney, 2003).
In U.S. military hospitals during the Second World War, skin
grafting was readily performed because of the high incidence of burn injuries;
at the same time, surgeons were made acutely aware of recurring host
rejection of tissue transplanted from one individual to another (Murray &
Komaroff, 2005). The bodys immune system treats any introduction of
foreign tissue or organs as a dangerous invasion; the natural result is rejection
- the rapid and comprehensive destruction of the unfamiliar object (Prottas,
25


1994). Although previously documented at the turn of the century by a
Milanese surgeon, the first published descriptions of tissue rejection in U.S.
literature appeared shortly after WWII (Tilney, 2003).
The wartime experience with surgical skin grafting became a window
of opportunity: Bio-medical and surgical research and intervention would
quickly expand to include transplantation involving human donor organs.
Voluntary Donation
A Symbiosis: Grave Robbing and Autopsies
The use of cadavers for scientific research can be traced to the
shadowy practice of grave robbing in the 18th and early 19th centuries.
Medicine had become a common and familiar discipline and patients wanted
to be treated by doctors who understood the bodys inner workings, which
could be learned only by studying a human corpse (Goodwin, 2004, 27,
citing Bazelon, 2002). In the United States and abroad, clandestine acts of
grave robbing and body snatching became necessary and catalytic
components in the advancement of the nascent science of medical anatomy
by providing much sought-after bodies and body parts to hospitals and
medical schools (Goodwin, 2004; Sappol, 2002; Marshall, 1995).5
5 U.S. facilities included Harvard, Yale, Johns-Hopkins, the University of Michigan, and the
Medical College of Georgia, among others (Kercheval, 2002).
26


Grave robbing was a common and lucrative practice (Hogarth, 2002;
Jackson, 2002).6 7 8 Cadaver teeth went to dentists, hair to wigmakers, bones to
the makers of medical skeletons, and, now, entire corpses went to medical
facilities (Sappol, 2002; Richardson, 2000, 1999, 1997). Consequently,
cadavers were considered commodities, i.e., objects of exchange, the value
of which fluctuated according to the law of supply and demand (Nelkin &
Andrews, 1998, 30; see also Sappol, 2002).7 8
Research hospitals and medical schools relied on this marginal
activity but, ultimately, their relationship began to taint the reputation of the
medical profession (Jackson, 2002). The public was growing increasingly
repulsed and irritated by the seedy and exploitative grave-robbing and body-
snatching activities; on occasion, riots and demonstrations occurred (Sappol,
2002; Richardson, 2000; Bynam, 1995). Both autopsies and grave robbing
came to be viewed as acts of desecration (Jackson, 2002, 4). Laws were
passed state by state to prohibit grave robbing (Nelkin & Andrews, 1998) but
the practice continued to some degree throughout the 19th century; pillaging
6 A notorious case involved the English team of Wm. Burke and Wm. Hare who, until their
arrest in 1827, not only robbed graves but murdered the destitute in order to supply their
clients (Jackson, 2002; Richardson, 2000; Nelkin & Andrews, 1998).
7 Hospitals and medical schools paid $10 to $35 for a body; at the time, this amount was
more than the weekly wage of a skilled worker (Sappol, 2002; Nelkin & Andrews, 1998).
8 When grave robbing was made illegal, the destitute became a new source for teeth and hair;
19,h century articles and cartoons depict poor adults and children having their teeth removed
and receiving a pittance for their pains (Tilney, 2003; Richardson, 2000, 1997).
27


graves was tacitly permitted (Goodwin, 2004, 28). Arrests or public
censures were rare because the activity was considered a necessary evil
(Putnam, 2003, 53).
Late in the 19th century, state governments began to authorize the use
of executed murderers and unclaimed dead by hospitals and medical schools
for autopsy purposes (Goodwin, 2004; Sappol, 2002; Richardson, 2000;
Nelkin & Andrews, 1998).9 As a result, the shortage of bodies for research
began to ease and, with it, came the demise of grave robbing.
While medical advancement occurred during the body-snatching era,
the extenuating circumstances highlight the tension between scientific
progress and personal dignity. The legacy of this era is public sentiment that
is sensitized to the dangers of donor organ commercialization and is adamant
that the body should stay outside the exchange of goods... sequestered from
the market economy (Sappol, 2002, 196).
A Paradigm Shift: Benthams Gift
Another event during the 19th century dramatically changed the way
bodies could be procured for scientific research. In 1832, as a final gesture of
his utilitarian view (the greater good for the greatest number), British
9 As an example, in 1890, Maryland created a State Board of Anatomy to provide the legal
means by which bodies of unclaimed indigents would be provided for medical use
(Goodwin, 2004).
28


philosopher, Jeremy Bentham, provided in his will that, upon his death, his
body be donated for autopsy, or public dissection (Jackson, 2002, S-3).
British Parliament soon endorsed Benthams action through voluntary
donation legislation. Following this ruling, U.S. states began passing
similar legislation (Jackson, 2002; House Hearings, 1983). Voluntary
donation of an individuals body or body parts upon death thus became a
lawful means to benefit medical progress.
A High Ideal: The Anti-Slavery Amendment
The practice of slavery in the United States raised contentious issues
about the use and handling of the human body. The abolishment of slavery
established lawful rights and privileges of any living individual. During the
Civil War, President Lincoln called for an end to slavery in his Emancipation
Proclamation and Congress subsequently enacted the 13th Amendment to the
U.S. Constitution in order to ensure individual autonomy and freedom for
future generations (Tilney, 2003; Rehnquist, 1998; Wright, 1994).
More than a century later, Congress debated the character and
disposition of human donor organs. A market exchange for human donor
organs was thought to be akin to a system of neo-millennial slavery and
would violate the Constitutional rights of at-risk populations (Goodwin,
2004, 8). It was forcefully argued that a system of donor organ procurement
29


should not endorse, or perpetuate, such activity (Tilney, 2003; Harris &
Alcorn, 2001; Johnson, et al., 1996; Prottas, 1994; Caplan, 1989). Instead,
voluntary gifting became the linchpin for the U.S. policy on human organ
procurement and transplantation.
Todays Transplantation Activities
The Pioneers
Transplantation research efforts began in the late 1890s with autograft
(of the same) and allograft (from another) organ and limb transfers in animals
(Tilney, 2003). By the beginning of the 20th century, experimental surgeries
were occurring in laboratories in the U.S. and across Europe including
France, Austria, Germany, Hungary, and Russia. The catastrophic effects on
the European economy between the two World Wars resulted in the lions
share of this research effort moving across the ocean to the United States
where a tremendous amount of philanthropic funding would become
available for academic endeavors and scientific research (Tilney, 2003).
These early efforts often involved persons who agreed to
experimental surgery because they faced imminent death due to organ failure
(Tilney, 2003). Unfortunately, the lack of expertise in both infection control
and human immunology made successful outcomes virtually impossible
(Prottas, 1994). Progress was hampered, in particular, by the effects of tissue
30


rejection, a factor that would not be researched until mid-century.10 What
came from these early efforts was an awareness by the medical community
that the relative success of any of the transplant procedures seemed to be
inadvertently related to unrecognized similarities between the donor and the
immunologically unmodified host (Tilney, 2003, 17).
The modern-day magic of organ transplantation began in the early
1950s with kidney transplant procedures between living relatives (Prottas,
1994). The first successful organ transplant on record11 was performed in
1954 at Bostons Peter Bent Brigham Hospital by Drs. Joseph Murray and
Hartwell Harrison. The procedure involved the transplantation of a healthy
kidney from a living donor, Ronald Herrick, to his identical twin brother,
Richard (Tilney, 2003; Kaserman & Barnett, 2002; Cooper, 1987). Over the
next decade, 35 additional kidney transplants between identical twins were
performed at Brigham and other hospitals by other transplant teams in
Portland, Montreal, and Paris. The transplant procedure performed on
10 During WWII, a military surgical team (including Dr. Joseph Murray, who would later be
involved in kidney transplantation) performed skin grafts on burn injury patients. One
patient, in particular, had such severe injuries that his immune system presumably was
thoroughly compromised, to the point of being tamed. As a result, allograft tissue
transplants were not rejected and the grafts successfully aided the recovery process. Dr.
Murray acknowledged that the practical knowledge of the immune system derived from this
one case helped launch the age of organ transplants (Murray & Komaroff, 2005).
11 The American Council on Transplantation eventually defined a successful procedure as
normal organ function one year after transplantation (Cooper, 1987, 18).
31


Richard Herrick remains the prototype for human renal transplantation
(Tilney, 2003, 63; see also Murray, 1982).
By the 1960s, immuno-suppressant drugs were being developed that
could forestall allograft organ rejection by a host body.12 With the
introduction of these drugs, allograft organ transplants from cadaverous or
non-related living donors were now possible, although non-related living
donation quickly declined in relation to the increase in cadaver donations
(Kaserman & Barnett, 2002; Darr, 1997; Darr & Sells, 1990; Tilney &
Hollenberg, 1990; Levey, et al., 1986).
A succession of firsts began: The first successful transplant of a
kidney from a deceased unrelated donor was performed by Dr. Murray in
1962, again at Brigham Hospital (Ethics, 2004; Tilney, 2003). The kidney
functioned for almost two years. Within a short time, Dr. Fritz Derom of
Belgiums University of Ghent performed a lung transplant for a recipient
who had end-stage respiratory failure (Sharma & Unruh, 2004). The patient
lived almost 11 months after the operation. Dr. Derom and his fellow
researcher-surgeons were the first to successfully treat and reverse episodes
of rejection by using immuno-suppressant drugs and irradiation.
12 Low-dose total body radiation was used during the 1950s and early 1960s, but the
frightening power of radiation realized through wartime experience made it abundantly clear
that a more controllable immuno-suppressant method was needed (Sharma & Unruh, 2004;
Tilney, 2003).
32


A team lead by Dr. James D. Hardy performed the first U.S. single-
lung transplant in a human at the University of Mississippi Medical Center on
June 11, 1963 (Sharma & Unruh, 2004). The recipient was a 58-year-old
man with left lung cancer; the donor was a patient who died from a massive
myocardial infarction. Unfortunately, the patient died on the eighth
postoperative day because of progressive renal failure despite kidney dialysis.
However, at autopsy, the transplanted lung was intact and evidence of
rejection in the transplanted lung was absent. In 1967, Dr. Thomas Starzl
performed the worlds first successful liver transplant at the University of
Colorado Health Sciences Center in Denver (Tilney, 2003).
On December 3rd of that same year, a South African surgeon, Dr.
Christiaan Barnard, transplanted the heart of a deceased donor into a living
recipient at the Groote Schuur Hospital in Cape Town (Tilney, 2003; Page,
1969). This was a momentous event the world had been put on notice that
the transplant of a human heart could indeed offer the promise of a second
life for individuals who otherwise would be facing certain death. This first
heart transplant was pivotal in shaping todays system of organ procurement
and transplantation (Veatch, 2000; Caplan, 1998).
The heart recipient, Louis Washkansky, lived for only 18 days;
however, the historical procedure was followed by a brief but frenetic period
of transplant activity across the globe. Dr. Norman Shumway performed the
33


first U.S. heart transplant at Stanford University in January 1968, just two
months after Dr. Barnards procedure (Tilney, 2003). Within a year, over
100 heart transplants had been performed worldwide.
This same period of time, continued attempts at kidney, liver and lung
transplants saw mixed results (Tilney, 2003; Johnson, et al., 1996; Cowan, et.
al, 1987). Although transplant successes were laudatory and well publicized,
uncertainty about the future of transplantation existed due to high numbers of
transplant failures (Tilney, 2003).
The Consequences of Success
The consequences of the intense transplant activity in the 1960s were
twofold: The sensationalism generated by the clinical procedures and related
media coverage created a circus aura surrounding those activities. At the
same time, transplants were producing results that were marginal most
recipients lived only briefly, perhaps a few days, perhaps a few months
(Tilney, 2003) at best, a 22 % one-year survival rate was being achieved
(Cooper, 1987).
Both of these situations were disconcerting for the public the first
was offensive, the second, frustrating and objectionable. Describing the tenor
of the times, Tilney wrote: The formidable mortality rate permeated public
consciousness, and opinions from the same press that had depicted the
34


[transplant] surgeons as heroes began to disparage their procedures (2003,
175). In a 2004 interview for The New York Times, Dr. Starzl recalled how
participants at scientific meetings lampooned his and other surgeons first -
and often disappointing reports (Altman, 2004, D6). Critics often publicly
accused transplant doctors of playing God (Tilney, 2003, 175).
Within the transplant community, realism overtook enthusiasm and
the innovative efforts, though they did not stop, certainly slowed down.
Those involved in organ transplantation reasoned that the radical nature of
their efforts demanded support by representative interest groups including
other scientific and social researchers, theologians, ethicists, politicians,
lawyers, caregivers, potential donors and donor families as well as the
candidates for transplants. Questions abounded: Who can give an organ?
Who decides? Under what circumstance? What is death? Who gets the
organ? Why? What about liability? Should we concern ourselves with the
social worth of the recipient? Social status? Who pays? And, of course,
what is fair?
Public concern about this nascent industry ultimately led to the
system we have today (Tilney, 2003; Prottas, 1994; Caplan, 1989). The state
legislatures and Congress soon would address the social, ethical, political and
legal concerns of transplantation through enactment of laws and regulatory
policies (Tilney, 2003; Harris & Alcorn, 2001; Cowan, et. al, 1987).
35


Industry Growth
!
In the earliest years of the emerging industry, preservation techniques
for donor organs were essentially nonexistent. As a result, procurement and
transplantation generally would occur within the same medical facility,
remaining a local matter wholly under the control of the transplant
surgeons (Kaserman & Barnett, 2002; Prottas, 1996). By the early 1970s,
improved technology and increased preservation times set the stage for
widespread distribution of donor organs. Organ procurement agencies
emerged, either independently operated or affiliated with a hospital (Prottas,
1994), and functioned as distribution portals for procurement and transplant
facilities within the same community, neighboring communities, and
eventually across state lines (Pierce & McDonald, 1996). However, as
Prottas (1996, 6) observed,
.. .allocation criteria varied from place to place; even
when an organ could not be used locally and was sent
to another [facility] in another region, informal
networks, traditional cooperation patterns, and
friendships had more impact on organ sharing than
formal criteria. Then, every doctor was a king and
every hospital a kingdom with virtually unfettered
freedom to set its own rules and procedures....The
result was one of the best organ procurement systems
in the world and one of the worst distribution systems.
Alliances began to develop between various transplant facilities. Of
particular note was an affiliation between two facilities in neighboring states
|
36


(the Medical College of Virginia in Richmond and Duke University in
Durham, North Carolina). These centers shared data in order to match
potential recipients with donor organs made available at either of facilities
(SEOPF, 2005). The arrangement soon expanded to include medical centers
in Maryland and Georgia. By the mid-1970s, the network, by now known as
the Southeastern Organ Procurement Foundation (SEOPF), had grown to 18
facilities in six states. SEOPF utilized a computerized matching program, the
efficiency and accuracy of which was unparalleled at the time.
Prestige and profitability drove transplant program development.
Transplant centers opened all across the country resulting in increased
competition for donor organs, a resource that was fast becoming scarce
(Kaserman & Barnett, 2002; Ubel, et al., 2000; Bronsther, et al., 1998).
There were, after all, only so many living donors willing to part with one of
their kidneys, and organ procurement was not only a disconcerting
experience for families who were intimately dealing with a horrible tragedy -
most commonly, the sudden death of a young and healthy family member -
but also risked a lawsuit (Silver, 1988).13
13 By 1968, 42 states had donation statutes. These lacked uniformity, however, differing
with respect to consent procedures, donor qualifications, and permissible uses of the
donation. Furthermore, the statutes failed to address interstate transactions a transplant
surgeon wishing to remove an organ in State A could not be certain of the legality of that
action if donor consent had been formalized in State B (Uniform Anatomical Gift Act, 8A
U.L.A. 16, 17 Prefatory Note, 1968, amended 1987).
37


Although enthusiasm for the concept of organ transplantation was
high, the public, in general, remained wary of the means by which donor
organ procurement and distribution were accomplished. Discontent prevailed
against what were perceived as inequitable and unfair practices (Tilney,
2003; Prottas, 1994). Public concern included symbolic issues such
as the sanctity of life and ethical issues such as perceived discriminatory
practices in procurement and distribution (Nolan & McGrath, 1990; Parisi &
Katz, 1986; Nagy, 1985; Simmons, et al., 1974). Questions were raised
about when death actually occurs, whether deceased donor bodies were being
desecrated, whether coercion or enticements encouraged living or deceased
donations, and how allocation was determined.
Advances in organ transplantation were again beleaguered by
culturally embedded traditions including social taboos and prohibitions that
can be traced from ancient times. Discourse on the ethics of transplantation,
in particular, the social and health-related issues of organ procurement made
it clear that the body is not a neutral object and that society imposed it with
layers of ideas, images, meanings and associations (Nelkin & Andrews, 1998;
Synnott, 1993; Camporesi, 1995; Fox & Swazey, 1992; Shanteau & Linin,
1990; Shepherd & Lefcourt, 1990; Titmuss, 1971). A leitmotif of cultural
ideals and social priorities guided the political, legal, ethical, technical, and
38


administrative ponderings that ultimately would define the characterization
and disposition of human donor organs.
Public Policy Implementation
Legislative Action
Unlike most medical technologies that only change what
we can do, transplants change our self-perceptions. Even
before funding became a major issue, transplant surgeons
in many states refused to do the procedures at all unless
and until their state legislatures passed laws on brain
death that limited what they saw as potential liability
for harvesting organs [recalling the grave robbing
scandals in the 19th century]. This involvement of state
legislatures in setting the legal and social stage for a
medical procedure by changing our very perception of
death is unique in this countrys medical-legal history.
From the corridors of state houses to the corridors of
hospitals, there is no other medical procedure that
requires this public involvement (Annas, 1987,168).
The potential for the public good derived from organ transplantation
demanded legislative action to articulate industry efforts (Chapman & New,
1997; Gerson, 1987). The government scrutiny and eventual regulatory
intervention of the transplantation industry came about because of the not
unlike concerns harbored by the public and by the medical community
(Prottas, 1996). On the one hand, the public was concerned with issues of
fairness and equity in procurement and transplantation; on the other hand, the
medical community was concerned with gaining public support through
39


political endorsement for these same procedures (Prottas, 1996). Taken
together, law and policy have sought to maximize benefits of transplantation
and encourage individuals to become organ donors while preserving certain
ethical restrictions against treating bodies as property or human beings simply
as resources (Cohen, 2003).
State governments initially dealt with the issues of donor rights
(Sullivan, 1996) and the determination of brain death (Annas, 1987).14 The
federal government, on the other hand, focused on fairness and equity in organ
procurement and allocation with the underlying proposition that donor organs
were the property of the public at large (Prottas, 1994, 19). Later, both levels
of government sought to further improve the efficacy of the procurement
system, in particular, the supply and availability of donor organs from both
living and deceased individuals. These combined actions have resulted in
organ procurement and distribution being one of the most carefully
adjudicated aspects of the medical system (Prottas, 1994, 19). But, what
effectively set the chain of events in motion leading to regulatory oversight of
organ procurement and transplantation was the 1965 Medicare Amendment to
14 In 1980, the National Conference of Commissioners on Uniform State Laws approved and
recommended enactment of the Uniform Determination of Death Act (UDDA) in all states;
included in this were criteria for determination of irreversible brain death (Ethics, 2004, 11),
procedurally necessary in a decision to harvest organs.
40


the Social Security Act signed into law by President Lyndon Johnson as one of
his Great Society initiatives (Defining, 1995; Johnson, 1965).
Federal Policy: End-Stage Renal Disease. Medicare is a federally
funded health insurance program that provides reimbursement for treatment
of illnesses and diseases afflicting both elderly and disabled individuals.
Kidney dialysis was among the first such treatments to be authorized for
reimbursement through Medicares ESRD (end-stage renal disease) plan.15
Kidney dialysis is a mechanical process used to remove toxins from
individuals who have been diagnosed with disabling, life-threatening kidney
disease (Annas, 1987). Soon after ESRD coverage was made available under
Medicare, the numbers of these procedures began to mushroom; people who
otherwise could not have afforded the treatment were at once able to seek
care. Within a decade, ESRD coverage of kidney dialysis would cost
billions, rather than the originally projected millions, of dollars. What had
initially been slated as a small budgetary expense for a minor program grew
to significantly higher funding levels than had been predicted.
When the 1965 Medicare funding for ESRD was authorized, it was
prudently estimated that 4000-5000 new kidney patients would be diagnosed
each year; yet, in 1982 more than 20,000 ESRD patients were identified and
15 In effect, the ESRD program became a national health insurance program for a specific
illness category (Prottas, 1994).
41


over 130,000 patients were already on kidney dialysis. By that time, the
annual cost had risen from $242 million in 1974 to almost $2 billion (Annas,
1987; Callender, 1987). This escalating federal liability eventually became a
driving economic argument in favor of kidney transplantation (Prottas, 1994).
By the mid-1970s, kidney transplantation had become a surgical
alternative for renal disease and was proving to be less expensive than
dialysis (Prottas, 1994). The potential for significant cost containment
prompted the federal government to authorize ESRD funds for kidney
transplantation. Interestingly, although funding had been appropriated, the
government apparently saw no need for oversight:
As long as the situation was stable, both parties
pretended they had nothing to do with each other.
The [transplant] system, 100 % dependent on ESRD
money, was virtually ignored by the source of its
financing, and the system in turn resented any
interference from outside, which was in any case
minimal (Prottas, 1994, 133).
While kidney transplant activity mushroomed, transplantation
procedures of other vital organs were on the rise primarily due to increasing
surgical success rate but also because of increasing-public acceptance of
transplant activity. Very soon, a disparity emerged between the number of
organs needed for transplants and the number of organs available. Although
no clear date is directly linked to this transition, the surge of transplant
activity during the 1970s effectively became a springboard for the present-
42


day disparity issue in the supply and demand of donor organs (Ubel, et al.,
2000; Bronsther, et al., 1998; Prottas, 1994).16
State Policy: The Uniform Anatomical Gift Act. State legislatures
were the first governing bodies to initiate public policy to bring a sense of
order to transplant activity. The National Conference of Commissioners on
Uniform State Laws issued the Uniform Anatomical Gift Act (UAGA) in
1968 to address perceived inequities in donor organ procurement (Sullivan,
1996; Featherstone, 1971; Sadler et al., 1969a, 1969b). Within the next four
years, versions of UAGA became law in each of the 50 states and the District
of Columbia (Kessinger, 1990; Cowan, et al., 1987).
The commissioners had been drawn into this situation because of the
varied and, in some cases, nonexistent state statutes regarding disposition of
bodies or body parts. Their investigation explored competing interests in the
disposition of a dead body. These included 1) the wishes of an individual,
2) the desires of the next of kin, 3) the interest of the state, and 4) the use of
cadavers in education, research and transplantation (Price, 2000). The
investigation also traced the origins and interpretations of common law and
property law doctrines in this country (Sullivan, 1996; Silver, 1988).
Throughout its history, U.S. common law provided that dead bodies
were the property of no one cadavers themselves were not property and, so,
16 By April 1985, the waiting list for transplants included over 7000 candidates for a donor
kidney, 40 for a donor heart, and 175 for a donor liver (Cooper, 1987).
43
i


did not create property rights for the decedent, the surviving family, or
anyone else (Silver, 1988; Scott, 1981; Jackson, 1950).17 Despite this no-
property rule, courts upheld individual rights, maintaining that the power to
dispose of a cadaver rested with the decedent, if pertinent instructions had
been issued by that individual while living, or with the surviving family, if
instructions had not been issued (Jackson, 1950).
In reconciling the no-property rule with individual rights, courts
generally upheld a proprietary interest empowering the decedent to decide, by
will, its fate (Silver, 1988; Kuzenski, 1924). Thus, in all U.S. jurisdictions,
notwithstanding common law, an individual could by will or by contract
supervise the disposition of his or her own remains, and, in the absence of
any directive, the next of kin had the same entitlement (Featherstone, 1971;
Jackson, 1950).
In reconciling familial rights with the no-property rule, some courts
conceded that surviving relatives were not proprietary owners but were
trustees who held the cadaver for the benefit of those with an interest in its
decent disposal (Silver, 1988).18 Still other courts held that relatives had no
17 Although the United States Constitution prominently includes the word property several
times, property is ultimately defined by state law and not by federal mandate (Stickney,
2002, 37). See Board of Regents v. Roth, 408 U.S. 564, 577-78 (1972) detailing the Supreme
Court decision that property interests are not created by the Constitution but are created and
defined by existing rules or understandings stemming from state law.
18 Pettigrew v. Pettigrew, 207 Pa. 313, 315, 56 A. 878, 879 (1904).
44


property rights in a cadaver but instead had quasi-property rights (Silver,
1988, 68).19 20 21 One court ruled forthrightly that whether or not dead bodies are
property, U.S. common law would be disgraced if it failed to recognize
that a surviving family had rights in the cadaver (Silver, 1988, 68).20 21
This was the state of the law when cadaveric kidney transplantation
began to occur in a near routine basis in the early 1960s.22 Adding to this
conundrum, any surgeon who harvested organs from deceased individuals for
the purpose of transplantation was subject to a civil suit and possibly to
criminal prosecution if found to have proceeded without consent of the
deceased or the survivor (Silver, 1988).23
19 Pierce v. Swan Point Cemetery, 10 R.I. 227, 238 (1872), ...that there is no right of
property in a dead body, using the word in the ordinary sense, may well be admitted. Yet,
there is a duty imposed by the universal feelings of mankind to be discharged by someone
towards the dead; a duty, and we may also say a right, to protect from violation; [a dead
body] may therefore be considered as a sort of quasi property (Silver, 1988).
20 "The dogma of the English ecclesiastical law that a child has no [sacred and inherent right
to custody of his parent's dead body] is so utterly inconsistent with every enlightened
perception of personal right, so inexpressively repulsive to every proper moral sense, that its
adoption would be an eternal disgrace to American jurisprudence." In: Widening of Beekman
Street, Appendix, Law of Burial, 4 Bradford Surr. 503, 529 (N.Y. 1875).
21 Statutes in every state invade this power of disposition in one important respect; regardless
of what the deceased or surviving family might desire, coroners or medical examiners may
examine and dissect a body if warranted (Silver, 1988, citing Weinmann, 1931).
22 Although cadaver organs were not actively sought for transplantation until the 1960s, the
legal right of a living adult to donate body parts has never been challenged (Silver, 1988).
23 See Recent Decisions Criminal Law: Mutilation of a Dead Body: Cal. Pen. Code § 290,
27 CALIF. L. REV. 217, 217-18 (1939) citing state statutes making mutilation of a dead
body punishable by a fine or imprisonment; see also Vestal, Taber & Shoemaker,
Medicolegal Aspects of Tissue Homotransplantation, 18 U. DET. L. REV. 171, 173 n.7
(1955) citing organ removal on the strength of consent to autopsy.
45


UAGAs prefatory note emphasizes the need to harmonize diverse
and competing interests in organ donation (Sullivan, 1996, 21):
The laws now on the statute books do not, in general,
deal with the legal questions in a complete or adequate
manner. [These] laws are a confusing mixture of old
common law dating back to the 17th century and state
statutes that have been enacted from time to time.
Some 39 states and the District of Columbia have
donation statutes that deal in a variety of ways with
some, but by not means all, of the legal questions....
[I]f utilization of bodies and parts of bodies is to be
effectuated, a number of competing interests in a dead
body must be harmonized, and several troublesome
legal questions must be answered.
[Some of] the principal legal questions arising from
these various interests are: (1) who may during his
lifetime make a legally effective gift of his body or a
part thereof; (2) what is the right of the next of kin,
either to set aside the decedents expressed wishes, or
themselves to make the anatomical gifts from the
dead body; (2) who may legally become donees of
anatomical gifts; (4) for what purposes may such gifts
be made; (5) how may gifts be made, can it be done
by will, by writing, by a card carried on the person, or
by telegraphic or recorded telephonic communication
(Sullivan, 1996, 21).24
24 Other legal issues included in the prefatory note were (6) revocation of the gift (it may be
revoked by the donor at any time during his or her lifetime but is not rescindable by another
party without the donors consent); (7) the rights of survivors to the body after organ
harvesting; (8) protection from liability afforded to surgeons and others (transplant personnel
are protected against lawsuits so long as they acted in good faith); (9) the effect of an
anatomical gift law in case of conflicting laws concerning autopsies; (10) determining the
time of death; and (11) prohibiting the physician in charge of a decedent from participating
in the recipients transplantation (the law provides that health professionals directly involved
in patient care of a potential donor and health professionals directly involved in harvesting
the donor organs not be the same individuals) (Sullivan, 1996; Prottas, 1994).
46


UAGA provided a valid means by which individuals could make a
gift of all or any part of their bodies, upon death. The act established 1) the
inalienable right of the individual and his or her immediate family to donate
organs and 2) the binding codicil of organ donor status as indicated on an
individuals state drivers license or identification card (Ethics, 2004; Prottas,
1994; Cate, 1994; Kessinger, 1990; Simmons et al., 1977).
Although the 1968 UAGA did little to foster organ donation, its
legislation resolved ambiguities surrounding the various state common laws
and donation statutes. Its chief effect was to define the rights of parties
interested in a deceased individuals remains. UAGA requires that the
recipient of the gift is the retrieving physician (Sullivan, 1996, 22; see also
Prottas, 1994) which is meant to dispel any suspected inequities in the
transfer of an organ from donor to recipient. Although UAGA was
successful in curtailing suspect procurement improprieties and making organ
transplantation legally feasible, what it did not do was address the perceived
inequities in the huge demand for donor organs or the uncontrolled trading.
Federal Intervention
By the mid-1980s, more than 70,000 kidney transplants had been
performed worldwide; in addition, 225 heart transplants and over 200 liver
transplants had been performed in the U.S. worldwide, the numbers were
47


more than 800 and 500, respectively (Cooper, 1987). A report by the
American Council on Transplantation indicated a 20-year survival rate for
recipients of a living organ donation from a family member and a 16-year
survival rate for recipients of a cadaverous kidney donation (Cooper, 1987).
One-year survival rates had grown to 85 % for kidney recipients, 80 % for
heart recipients, and 65 % for liver transplant recipients (Cooper, 1987).25
However grandiose these events and statistics appear to be, this stage
can best be described as anarchic; the unregulated industry was being driven
by a rapidly accelerating rate of surgeries, a palpable dearth of donor organs,
and fierce competition among transplant centers not only for organs, but for
the prestige that came with high success rates (Brewster, personal interview,
August 6, 2003; Kaserman & Barnett, 2002). By the early 1980s, 173
hospitals across the country were certified as kidney transplant centers by the
Department of Health and Human Services (HHS) and were eligible for
Medicare-ESRD reimbursement (Cooper, 1987; Callender, 1987).
Certification, however, cannot be likened to regulation: The expanding
industry lacked oversight and functioned with little coordination and virtually
25 Today, the one-year success rate is 94% for cadaveric kidney transplants and 97% for
living donor transplants; heart transplants have a one-year survival rate of 85-90%, and liver
transplants have a rate of 89% (Facts, 2005) which compares quite favorably to pre-
cyclosporine success rates of...70% for kidneys, 58% for hearts, and 25% for livers
(Kaserman & Barnett, 2002, 30).
48


no standardization of protocols. Importantly, discrimination in donor organ
allocation was prevalent (Kaserman & Barnett, 2002).
Although the concept of organ transplantation offered hope for
survival in the face of life-threatening illness, many people were being passed
over for the procedures. The two key discriminatory issues included 1) the
high cost of the transplant procedure (many people simply did not have the
money for the procedure or, if they did, they might not have been able to
cover the high cost of what was then expected to be a lifetime regimen of
anti-rejection, immuno-suppressant drug therapy) and 2) the increasing
unavailability of donor organs in a competitive market (the lack of supply
coupled with the intense competition to gain or maintain a reputation as a
prestigious transplant center influenced the choice of a candidate for a donor
organ; for example, an otherwise healthy individual might take precedence
over someone who had a secondary condition and so was less healthy)
(Brewster, personal interview, August 6, 2003; Prottas, 1994).
By 1978, another benchmark had occurred in transplant efforts with
the introduction of cyclosporine, an immuno-suppressant drug that was
proven to dramatically decrease the risk of organ rejection (Caplan, 1987).
Prottas (1994, 131) noted that by the early 1980s, its use was absolutely
standard and, most physicians would argue, medically required. The cost of
this drug regimen ran into the tens of thousands of dollars (Prottas, 1994).
49


Co wen, et al. (1987, 402) observed, Some patients were not considered... for
transplantation if they could not afford this new drug regimen.
A particular issue here was ESRD funding which covered the cost of
transplantation but did not offer reimbursement for immuno-suppressant drug
therapy (Prottas, 1996).26 A candidate for transplant was considered high-
risk if he or she could not pay for post-transplant drug treatments (Excerpts,
1987). In addition, potential recipients had to have sufficient insurance
coverage or be financially able to cover the cost of the procedure.
Also, to remain competitive, transplant centers concentrated their
efforts on high numbers of potentially successful procedures. Because of
this, candidates for transplantation had to have the necessary health predictors
in order to be deemed survivable. Candidates from the lower socio-economic
population were more likely to have multiple debilitating health conditions
such as diabetes, hepatitis, and hypertension and less likely to be able to
afford the procedure and post-transplant drug therapy (Excerpts, 1987, 236).
This double-barreled combination denied an entire population group equal
and fair access to available donor organs (Callender, 1987). Repeatedly,
more desirable candidates, including foreign nationals, received preferential
treatment. In one incident, a wealthy foreigner reportedly made generous
26 By 1985, ESRD funding had been approved for post-transplant care and immuno-
suppressant drug therapy for a period of one year, later increased to three years (Prottas,
1994). Medical research and clinical trials since the mid-1990s have successfully reduced
drug therapy schedules (Tilney, 2003).
50


donation to a transplant centers research program and soon after received a
kidney transplant (Kaserman & Barnett, 2002).
As the schism between the haves and have-nots widened, the
public became increasingly concerned about the issue of social worth in
transplantation (Excerpts, 1987). At the same time, the medical community,
intent on moving forward with transplantation and increasing productivity,
was mindful that this would necessitate public support and public funding -
transplantation had to be construed as being available to all (Prottas, 1994,
134). To this end, the federal government was asked to endorse organ
transplantation by providing additional funding for all other transplant
procedures. In addition to gaining financial security through additional
funding, this endorsement would rejuvenate public approval.
Asking Congress for its endorsement to obtain some immediate
benefit had the unintended consequence of ending the transplant industrys
high age of feudalism (Prottas, 1996, 6). The medical community had
unwittingly undermined its monopoly over transplantation policy (Prottas,
1994, 134) by providing the opportunity for Congress to fully examine the
scope of organ procurement and transplantation. As a result, lawmakers were
made acutely aware of the out-of-control state of transplantation activity,
characterized by a demand for scarce organs in an atmosphere of territorial
disorganization, uncontrolled trading, and lack of standardized rules.
51


Particularly disturbing were the reports of attempts to set up
brokerages for the purposes of buying and selling human organs (Jackson,
2002; Prottas, 1996). One alarming incident involved a Virginia physician,
H. Barry Jacobs, founder of International Kidney Exchange Ltd. (Harris &
Alcorn, 2001). Early in 1983, Dr. Jacobs sent a marketing brochure to
hospitals across the country offering to broker contracts between patients
and persons willing to sell one kidney (Joralemon, 2001, 30).
[Dr. Jacobs] offered payment up to $10,000 for a
healthy kidney; the purchaser would pay for the cost
of the kidney, all related expenses, and a brokerage
fee of $2,000-$5,000 per kidney. Jacobs intended
not only to recruit sellers in America, but also look to
Third World sources as well. Acknowledging that
informed consent from illiterates would be difficult,
he planned to videotape consent (Harris & Alcorn,
2001, 213).27
This extreme attempt at establishing a market in human donor organs
including the potentially exploitative involvement with third-world donors
sparked an ethical debate that quickly resulted in state-level legislative action
(Joralemon, 2001). In just a few short months after Dr. Jacobs ad campaign
was made known to them, legislators for the State of Virginia passed a law
banning the sale of human organs (Jackson, 2002; Harris & Alcorn, 2001).
27 This business matrix was similar to an earlier, also unsuccessful, attempt in Germany to
establish a brokerage for which those with financial need would be the source for kidneys
and would benefit from a $30-40,000 purchase price (Daar, 1997, 47).
52


In short order, the federal government would act in response to this issue
(Jackson, 2002; Johnson, et al., 1996; Prottas, 1994; Caplan, 1989).
Federal Policy: National Organ Transplant Act. The following year,
1984, fully 30 years after the first successful kidney transplant in the U.S., the
Congress enacted legislation that classified human donor organs as a public
trust, or property of the public at large, and mandated stringent donor organ
and transplantation regulation. Bipartisan bills ran concurrently through the
House and the Senate sponsorship for House Bill 5580 was headed by then-
Representative Al Gore (D-Tennessee) and Senate Bill 2048 had the primary
sponsorship of Orrin Hatch (R-Utah). The Senate bill was brought to a vote
with an astonishing 90 co-sponsors from both major political parties
(Joralemon, 2001).
Legislative records indicate that very little debate preceded passage of
the National Organ and Transplant Act (NOTA), U.S.C. 273, et seq, Public
Law 98-507 (Senate Report 98-382, 1984; see also House Hearings, 1983).
The Senate Labor and Human Resources Committee concluded simply that
individuals or organizations should not profit by the sale of human organs
for transplantation, and that because the law was uncertain on that point,
legislation was necessary (Shapiro, 2002, 375).
53


The public hearings included testimony regarding a ban on the sale of
human donor organs (House Hearings, 1983). Examples of opposing
viewpoints follow:
In support of a ban -
Bernard Towers, M.D., Co-Director, UCLA Program in
Medicine, Law, and Human Values: .if it should become
the case that organs of dead people or organs of living people
should be offered for buying and selling, then...this would
represent a major degradation for humankind.
Utilitarian arguments against the purchase and sale for profit
of human organs and tissues include the increase of risks of
transmission of disease and, at a deeper level, the eminent
social dangers of exploitation of poor, sick people who might
be persuaded (by themselves or others) to further impoverish
their lives for the sake of some immediate and transitory
benefit. But.. .utilitarian arguments ought not to be the basis of
the legislation.
[There] are much more powerful deontological arguments,
rule-based arguments, about what it is to be a human being and
what it is to have been a member of society and to have died.
The most famous contribution to the question of the ethics of
buying and selling human tissue is by Richard Titmuss, the
sociologist, in a book called The Gift Relationship: From
Human Blood to Social Policy....Titmuss mounted powerful
arguments against the collection of blood for sale. It is
offensive to make a persons body into a thing for purposes
of gain, even if the gain appears to be mutual. Though a person
may always give freely of himself or herself, that very
powerful bond that is developed in a true gift relationship is
destroyed or aborted when the transaction (in something so
intimate as parts of ones own body) becomes contaminated by
the exigencies of trade.... We need to educate the public about
the remarkable social benefits that flow from the gift
relationship, as spelled out by Titmuss.
54


And, in opposition to a ban -
H. Barry Jacobs, M.D., Medical Director, International Kidney
Exchange, Ltd.: The voluntary organ donor program in this
country is a dismal failure. Too many citizens anxiously await
the health-sustaining and life-saving [organ] which they will
never receive not under the current donor program which
offers neither incentive nor motivation for people to give up
one of their kidneys to a stranger. There is no stronger
motivation than a monetary one....In the final analysis, this
debate should be resolved by individual doctors and their
patients; not by politicians.
During the public hearings in the House, Representative Gore
expressed concern about treating the body as a commodity in a market
economy: It is against our system of values to buy and sell parts of human
beings....The notion has perhaps superficial attraction to some [but] this
ought to be an exception because you dont want to invest property rights in
human beings....It is wrong... (Nelkin & Andrews, 1998, 30, citing House
Hearings, 1984, 128).
A Congressional report that accompanied the approved bill included
this declaration: ...individuals or organizations should not profit by the sale
of human organs for transplantation... human body parts should not be
viewed as commodities (Senate Report, 1984, 16).
Section 301 of NOTA, Prohibition of Organ Purchases (42 U.S.C. §
274e; see also S. Rep. No. 2383, 98th Cong., 2nd Session 1984 WL 37470)
stipulates:
55


(a) Prohibition. It shall be unlawful for any person to knowingly
acquire, receive, or otherwise transfer any human organ for
valuable consideration for use in human transplantation if the
transfer affects interstate commerce.28
(b) Penalties. Any person who violates subsection (a) of this
section shall be fined not more than $50,000 or imprisoned
not more than five years, or both.
(c) Definitions. For purposes of subsection (a) of this section:
(1) The term "human organ" means the human (including
fetal) kidney, liver, heart, lung, pancreas, bone marrow,
cornea, eye, bone, and skin or any subpart thereof and any
other human organ (or any subpart thereof, including that
derived from a fetus) specified by the Secretary of Health and
Human Services by regulation.
(2) The term "valuable consideration" does not include the
reasonable payments associated with the removal,
transportation, implantation, processing, preservation, quality
control, and storage of a human organ or the expenses of
travel, housing, and lost wages incurred by the donor of a
human organ in connection with the donation of the organ.
(3) The term interstate commerce has the meaning
prescribed for it by § 321(b) of Title 21.29
28 Although NOTA is limited to transactions that affect interstate commerce, some legal
scholars interpret the act as prohibiting intrastate organ sales as well, based on broad judicial
construction of Congresss commerce clause power to prohibit activity of a seemingly local
nature that could affect interstate commerce. See Heart of Atlanta Motel v. United States,
379 U.S. 241 (1984); see also Katzenbach v. McClung, 379 U.S. 294 (1984).
29 Title 21 § 321(b) Food and Drugs: Chapter 9: Subchapter II defines interstate
commerce as (1) commerce between any State or Territory and any place outside thereof,
and (2) commerce within the District of Columbia or within any other Territory not
organized with a legislative body.
56


The Principles of Organ Donation
By enacting NOT A, Congress intended to criminalize the buying and
selling of organs for profit, but did not address voluntary donation of organs.
Thus, NOTA § 301 in no way refers to donation of an organ; instead, it refers
to transfers for valuable consideration (a monetary or valuable property
transfer in a sales transaction) which is the language of contracts, not the
language of gifts (Ritsch, 2005). A gift is a voluntary transfer of property
to a beneficiary who receives it without paying the donor for it (Black &
Garner, 2001). The essential elements of a gift include 1) intent to donate,
meaning the intent to transfer voluntarily, 2) the actual transfer to a
beneficiary and 3) receipt by the beneficiary of the gift (e.g., a kidney and
potential health benefits) without paying the donor for it, i.e., the beneficiary
pays no valuable consideration to the donor.
Indeed, the harbinger for donor organ gifting had been in place since
the onset of the ESRD program30 31 (Prottas, 1994; Simmons et al., 1977).
ESRD regulations clearly state that for any kidney patient whose treatment
is federally supported no program reimbursement may be made for the
30 The courts have found that gifts cannot contain [valuable] consideration. See Rusk v.
Rusk, 5 S.W.3d 299, 303-05 (Tex. App. 1999) (absence of consideration is key to finding a
legal gift); see also Pankhurst v. Weitinger & Tucker, 850 S.W.2d 726, 730-731 (Tex. App.
1993) (lack of consideration is an essential characteristic of a gift) (Ritsch, 2005, 4).
31 Although it has not been labeled as such, ESRD is considered by many to have been the
inaugural federal intervention program for transplantation.
57


kidney itself that is, if the donor were to sell his kidney, the purchase price
may not be reflected in any program payment (Simmons, et al., 1977, 35).
In addition, the earliest recorded organ donations in this country were
between living relatives and the assumption permeating transplant activity
was that there was no obvious need to consider payment to encourage donor
cooperation. Indeed, if kinship could not guarantee the gift of a donor organ
and if an exchange of money were to occur, it was assumed that family
members would deal with the transaction between themselves without
resorting to a middleman generally required for a market exchange
(Kaserman & Barnett, 2002, 7). If payments did occur, they were not public
record and were kept isolated from the transplant community to avoid
conflict of interest charges (Kaserman & Barnett, 2002). However, with the
advent of cadaverous donations, the potential for organ sales exposed the gulf
between haves and have-nots and vastly affected public sentiment toward
procurement and transplantation of donor organs.
Finally, the core democratic tenets of autonomy, self-determination,
fairness, and equity underpin donor organ policy, that is to say, in American
society, putting a price on something as sacred as ones body, or body parts,
reduces the individual to an object and is considered to be in opposition to
democratic tradition (Tilney, 2003).
58


Organs as Gifts. Organ donation is not just personal action it is a
social act (Kluge, 1989). Like other gift transactions, it is embedded in a
social context; unlike other gift transactions, however, organ donation
requires societys direct participation. This involvement entails principles
that govern all social interactions in a fundamental way but are uniquely
represented in organ donation. Kluge (1989, 12) explains:
[Organ donation] is not like transactions where value
and significance is a function solely of the interaction
between donor and recipient and the gift connection
consists essentially of a transfer of items from one
person to another. For instance, gifts of clothing,
food, and shelter are gifts of items that are significant
in and of themselves. Although these gifts may also
have various socially important purposes, none
imposes an obligation on others to do something so
that the gift may become meaningful and
significant....To put it more concretely, the gift of a
liver, kidney or heart to someone who requires an
organ is useless... without active social involvement
and intervention.
Organ donation involves not only individual donors and recipients,
but the support of families and communities as well as the collaborative
efforts of the procurement and transplant teams and a whole array of
bureaucratic and support services Society itself becomes a participant
giver (Kluge, 1989, 12). Figure 2.1 below illustrates the interface of the
multi-sector, multi-faceted involvement in organ donation.
59


Public
Federal: NOTA, HHS, Medicare State: UAGA, DMV "
Non-Profit Private
OPTN OqguW \ Donor
UNOS Recipient
OPO Community
DAC Insurance
Procurement and Transplant Centers
Figure 2.1 Multi-Sector Involvement in Organ Donation
Organs as Goods. Donor organs are equally exceptional in their
classification as goods. Human organs, unlike any other product or property,
transition between private goods and public goods status during the process
of transplantation. Prior to procurement from one individual and after
transplantation to another, human organs are exclusively private goods, that
is, they are the sole property of either the donor or the recipient. This status
changes during the brief time that elapses between procurement and
transplantation. Donor organs become public goods at the time of
60


procurement and the inviolability of this status is upheld by public policy. In
order to ensure that the status as public goods is not breached, public policy
establishes management criteria and allocation requirements for the handling
and distribution of donor organs.
Broadly defined, private goods are classified as rivalrous and
excludable and public goods as non-rivalrous and non-excludable
(Weimer & Vining, 1999, 75). Private goods are rivalrous as defined by
their usability and are excludable if a single individual, or entity, has control
over that use (Savas, 2000; Weimer & Vining, 1999). Personal items such as
shoes, clothing, housing, and an automobile are rivalrous and excludable
private goods; until donation and after transplantation, human organs can be
similarly classified as they are of singular use to one person.
By contrast, a non-rivalrous, non-excludable public good must be
provided in equal quantities to all members of the community (Mueller,
2003, 11) or if provided for anyone, is available to everyone (Collard,
1978, 8). The air we breathe is a quintessential example of this type of public
good; other types of public goods include city parks, public education, and
laws as well as their enforcement. Similarly, donor organs, at the time of
procurement and prior to transplantation, are non-rivalrous, non-excludable
public goods. As a public trust, donor organs are made available for public
benefit and in order to maximize this benefit, public policy mandates a
61


specific community to which these organs are to be appropriated, that is, the
community that includes those individuals who are waitlisted as transplant
candidates. For this brief time, donor organs are public goods.
Figure 2.2 illustrates the transition of organ goods prior to donation,
after procurement, and during the recovery and transplantation phase. Until
procurement, human organs are private goods (Step 1) and return to this
status after transplantation (Step 3); in the interim, donor organs are public
goods (Step 2). This unique migration distinguishes the transactional
characteristics of human organs based on ethical perspectives in our society.
62


The Scope of Federal Policy
In addition to designating human donor organs as a public trust and
prohibiting their sale or purchase with the enactment of NOTA in 1984
(Public Law No 98-507), Congress called for the creation of a Task Force on
Organ Transplantation for the purpose of conducting comprehensive
examinations of the medical, legal, ethical, economic, and social issues
presented by human organ procurement and transplantation (Banks, 1995,
53; see also Williams, 1989). The Task Force was administered by HHS; it
included representatives of the Office of the Surgeon General, National
Institutes of Health (NIH), Food and Drug Administration (FDA), and the
Health Care Financing Administration (HCFA) as well as the disciplines of
medicine, law, ethics and theology, allied health professions, insurance, and
the public (Executive Summary, 1987).
A two-year effort by the Task Force culminated with a comprehensive
list of recommendations that had a significant effect on composition of the
transplant arena and procedural guidelines for donor organ procurement and
allocation. Importantly, these recommendations included protective
safeguards for at-risk population groups, including the poor, the young, and
the ailing (Task Force, 1986).
Principles of equity and fairness in procurement and allocation were
emphasized with a recommendation that organ allocation standards be based
63


solely upon objective medical criteria (Banks, 1995; Williams, 1989). The
Task Force recommended limiting the use of living donors, citing the risk to
an otherwise healthy individual (Williams, 1989). It also categorically
rejected a commercial market in human organs (Williams, 1989; Executive
Summary, 1987) noting that societys moral values militate against
rendering the body as a commodity (Shapiro, 2002, 378).
The Task Force also considered it fundamentally necessary that state
and federal laws be in alignment so as to represent a unified approach to
transplantation efforts. It also proposed that comprehensive regulatory
guidelines be implemented for organ procurement centers and that
educational efforts be instituted in an effort to create a unified and
collaborative approach to organ procurement practices (Williams, 1989;
Executive Summary, 1987). With this goal in mind, the establishment of a
single nation-wide system for organ sharing to facilitate and encourage organ
donation and education was recommended (Banks, 1995; Executive
Summary, 1987).32
The Task Force recommended the establishment of the Organ
Procurement and Transplantation Network (OPTN), a national registry for
32 See Cadaveric Organ Donor Act, 18 IOWA J. CORP. L. 543 (1993), a proposal for a
comprehensive, national registry for the donation of cadaver organs through a system of
mandated choice, requiring all persons who apply for social security cards, drivers licenses,
etc., to designate their organ donation desire (Banks, 1995).
64


donor-recipient matching (OPTN, 2000). Management of the OPTN registry
was awarded by federal contract to the United Network of Organ Sharing
(UNOS),33 formerly SEOPF, which, by this time, had expanded into a
nationwide transplantation network utilizing a state-of-the-art computerized
matching system (Veatch, 2000; OPTN, 1999).34
An additional safeguard against any potential market in organs is the
requirement that organ procurement organizations (OPOs) have non-profit
status and rely on federal funding for their operating budgets. Another
stopgap measure requires transplant centers maintain OPTN membership in
order to qualify for federal reimbursement of their transplantation procedures
and activities (Graham, 1999; Prottas, 1994).35
Several years in the making, the passage of NOTA led to uniform
standards in matching criteria and recipient selection (Wilker, 1989), uniform
acceptance of the legal definition of death (Pearson, 1997), and organ
33 The seven-year federal contract with UNOS has been renewed repeatedly since 1986; the
last renewal occurred in 2005 (Warren, 2005).
34 By 1982, SEOPF, the data-sharing organization for much of the southeast region, was
successfully utilizing a computerized matching program and it was thought that the system
would have even greater potential on a national scale (SEOPF, 2005). To this end, SEOPF
enlisted participation of transplant programs across the country. In 1985, as a result of
increased membership, SEOPF was renamed and incorporated as UNOS (OPTN, 1999).
35 OPTN membership includes every transplant center, OPO, and histocompatibility
laboratory in the country; also included are representatives of the general public, voluntary
organizations such as the American Diabetes Association, and professional/scientific
organizations, such as the American Medical Association (OPTN, 2006b). OPTN members
actively participate in formulating policies that govern procurement and transplantation.
65


exchanges meant to optimize procurement, decrease waste and improve
outcomes (Pierce & McDonald, 1996; Phillips, 1996).
Organ Allocation. UNOS members36 participate in an organ-sharing
process that has been designed with a goal of equitable allocation. Transplant
candidates are waitlisted according to standardized criteria (Veatch, 2000;
OPTN, 1999; UNOS, 1993); recipient eligibility is dependent on the organ
required, time on the list, medically related criteria, and geographic
considerations (Kahn, 2000; McMullen, 1999; Pierce & McDonald, 1996;
Banks, 1995; UNOS, 1993; Starzl, et al 1989; Wilker, 1989).
UNOS established eleven geographic regions (Figure 2.3, below)
based on a pre-NOTA sharing-pattern formula in addition to size and activity
levels (UNOS, 2006; Kahn, 2000; Burdick, 1999; Pierce & McDonald,
1996). Matches generally followed a local-regional-national distribution
scheme (Burdick, 1999; McMullen, 1999; Starzl, et al., 1989). A donor
organ procured in Denver, for example, would be matched with a transplant
candidate in the Denver area; if no match could be made, the search would
expand regionally and then nationally.
36 UNOS is governed by a 33-member board of directors representing each region and each
category of OPTN membership (Norman, 1994). Within the organization, committees have
specific responsibilities including medical criteria, membership and professional standards,
organ procurement and distribution, ethics and patient affairs.
66


1
Key: Region 1: CT, ME, MA, NH, RI
Region 2: DE, DC, MD, NJ, PA, WV
Region 3: AL, AR, FL, GA, LA, MS, PR
Region 4: OK, TX
Region 5: AZ, CA, NV, NM, UT
Region 6: AK, HI, ID, MT, OR, WA
Region 7: IL, MN, ND, SD, WI
Region 8: CO, IA, KS, MO, NE, WY
Region 9: NY, VT
Region 10: IN, MI, OH
Region 11: KY, NC, SC, TN, VA
Figure 2.3 UNOS Regional Map (UNOS. 2006)
It has been argued that nationwide need-based allocation guidelines
could better achieve maximum benefit in organ transplantation (Ethics; 2004;
Ojo, et al., 2004; Task Force, 1992). The dissimilar need and availability
rates for donor organs across UNOS regions are central to this argument;
67


Colorado and Florida, for example, are high-donor areas whereas Illinois and
New Jersey are high-need areas. Although a candidate in a high-need area
may be seen as having a greater medical urgency for an organ transplant, a
donor organ recovered in a high-donor area might not reach that candidate
because of allocation based on a local-first system of distribution. A local-
first system is thought to perpetuate a high number of unnecessary deaths
within the high-need regions (Kaserman & Barnett, 2002).
A principal argument for a local-first system is that individuals are
more likely to become organ donors knowing that the organs will stay within
the community in which they reside rather than transported out of area for
transplantation (HRSA, 2000; OPTN, 1996). The concern is that donor rates
may drop if donor organs are distributed outside of the procurement area.
Whether there is a link between community and donation rates was
discussed during a 1996 HHS public hearing (OPTN, 1996). Results of an
1994 OPTN survey showed that an overwhelming majority of donor families
would have wanted the donor organs to go to individuals most in need of a
transplant, regardless of geography (UNOS, 1994). Additional studies have
shown that organ donors want assurance that distribution is done fairly
(Prottas & Battan, 1991; National Kidney Foundation, 1992; Gallup
Organization, 1985). None of these studies found evidence to support the
68


argument that distribution boundaries were persuasive in the decision to
become an organ donor.
There is no convincing evidence to support the claim
that broader sharing would adversely affect donation
rates or that potential donor numbers would decline
because an organ might be used outside the
immediate geographic area. In fact, there is some
evidence suggesting that broader sharing is associated
with increased rates of donation, although the reasons
are not clear (Institute of Medicine, 1999, 47).
During the past several years, particularly because preservation
capability and transport efficiency have continued to improve, geographic
allocation boundaries have become more and more blurred (Exley, personal
interview, October 17, 2005; Allen, et al., 1997; Yuan, et al., 1997; UNOS,
'XI
1996). A distribution system based on need and organ viability has
become a goal of UNOS and the transplant community (Browning &
Thomas, 2001; Allen, et al., 1997; UNOS, 1995). Guidelines for allocation
are being revised as medical need, now more than ever, is central in
distribution standards (Mongoven, 2003; Snell, et al., 2000; Daubert, 1998).
For example, a recently implemented scoring system for donor liver
allocation is thought by many to be fair and a step in the right direction, 37
37 There is an increased risk for graft failure of a donor heart beyond four hours of ischemic
time: It takes one hour of air time to cover 500 miles in a Lear jet. Given an estimate of 30
minutes transport time between airport and hospital on both legs of the procurement run and
one hour to suture the donor heart into the recipient, a radius of 500 miles will translate into
an ischemic time of three hours or less, whereas 1,000 miles will result in an average of four
hours of ischemic time (Allen, et al., 1997, 326).
69


though there is much room for improvement (Yoo & Thuluvath, 2005, 536;
see also Neuberger & James, 1999).
Organ Procurement. The federal NOTA and state UAGA policies
jointly support the method of assisted volunteerism for procurement of
donor organs (Cohen, 2003; Banks, 1995). The question whether this
method has been a success or failure is complex because many lives have
been saved and yet thousands of individuals die each year while waiting
for organs. What is perceived as success to one observer may be viewed
as a crisis to another (Cohen, 2003). Although the organ shortage is
responsible for at least several thousand deaths each year (Kaserman &
Barnett, 2002, 133), it may be a misnomer to declare that the shortage is
the cause of death for those waiting for organs (Cohen, 2003, 1). The
public good occurring through transplantation efforts if measured simply
as the number of patients with organ failure who have been saved
continues to improve and the causes of death for those who die waiting
for organs are the same disease processes that existed before organ
transplantation was even possible (Cohen, 2003, 1).
This conundrum has fueled a continuing debate over the existing
procurement method of assisted volunteerism and whether it ought to be
70


abandoned, modified or preserved38 39 (Cohen, 2003; Kaserman & Barnett,
2002; Veatch, 2000; Prottas, 1994). The inherent weakness of voluntary
organ donation lies in the fact that not enough organs are being procured to
meet the need, but the abiding strength of this donor model is its presumption
of the inviolability of the individual.
Three most commonly discussed alternative methods of donor organ
procurement include: 1) a commercial model, in which transplantable organs
would be bought and sold, or a hybrid that would combine altruism with
incentive-based donation (Silverman, 2004; Childress, 2003; Epstein, 2003;
Pence, 2003; Post, 2003; Kaserman & Barnett, 2002); 2) mandated choice,
requiring all individuals who apply for Social Security cards or drivers
licenses to designate their desire regarding organ donation (Ballard, 2003;
Farsides, 2000; Veatch, 1989); and, 3) presumed consent,' an opt-out system
where organs from deceased individuals are presumed to be donated unless
an objection has been formally expressed by the individual during his or her
lifetime (Kennedy, et al., 2003; Phillips, 2003; Prottas, 1994).
38 The caveat in any discussion about procurement methodology is the improbable separation
of the debate over cadaveric organ donation from the debate over living organ donation
inasmuch as each is grounded by property law rulings, each relies on individual choice, and
each is interwoven with the mandated allocation system (Cohen, 2003).
39 UAGAs presumed consent authorization is considered a weaker variant of presumed
consent in that physicians or coroners are required to honor preexisting objections from the
deceased or the family (Banks, 1995; Caplan, 1989).
71


Commercial Model. One of the most highly contestable donor
models would give individuals and their families the freedom to accept
payment for donor organs.40 Critics argue that commodification is both
unethical and disrespectful (Cohen, 2002; Kaserman & Barnett, 2002;
Kuczewski, 2002; Delmonico, et al., 2002). The objection raised most
frequently is that any attempt at commercialization would be potentially
coercive and unfairly compelling to the economically disadvantaged
population, some of whom would donate their organs for much-needed
money. Thus, this method of procurement would unnecessarily and
unscrupulously create a mode of victimization. Wealthy individuals, on the
other hand, would benefit unfairly through financial accessibility to donor
organs. A survey of people who sold a kidney in India found that the money
they received in exchange did not improve their standard of living (Goyal, et
al., 2002). This study found that among the donors (Ethics, 2004, 26, citing
Goyal, et al., 2002):
96% sold their kidneys to pay off debt.
74% were still in debt six years later.
86% reported deterioration in health after donation.
79% would not recommend donation to others.
40 In June 2003, a representative of the American Medical Association (AMA) testified
before Congress that studies should be conducted on the potential outcomes of incentives for
donations. The speaker stressed that the AMA does not endorse incentives but wants to
encourage research in the field (Ethics, 2004; AMA, 2003).
72


Critics also argue that allowing payment to living persons who
donate solid organs could lead society to view poor people as suddenly
having capital and consequently being ineligible for welfare benefits (...a
man with a $50,000 kidney, like a man with $50,000 in the bank, would not
qualify for welfare) (Andrews, 1995, 196).
Advocates see commercialization as a panacea for the organ supply
and demand disparity and the socio-economic disparity as well as a testament
to free will (de Castro, 2003; Kaserman & Barnett, 2002; Amerling, 2001;
Dworkin, 1993). Poverty, they argue, is a force that drives people to act out
in desperation for money but without objective and informed reasoning; if
socio-economic disparities were eliminated, a morally correct commercial
market could be established (Ethics, 2004; Veatch, 2000). Other market
advocates suggest simply that the provision of such enormous benefit for the
recipients warrants compensation for the donors (de Castro, 2003;
Kuczewski, 2002).
Providing any sort of incentive basis for organ donation falls into
legal and ethical gray areas; however, these approaches are being explored as
addenda to the current voluntary model of donation (Ethics, 2004).
Compensation models include financial assistance for funeral costs to
families of a deceased donor, reimbursement for wages lost or child care
costs incurred by a living donor, charitable donations in donors name, or
73


recognition and gratitude through a plaque or medal (Ethics, 2004;
Delmonico, et al., 2002).41
In 2002, Pennsylvania began a program to provide payment of $300
toward the costs of food and lodging for donors or donors' families involved
in an organ donation; the payment is made through an Organ Donation
Awareness Trust Fund (PA, 2002). The concept for the program originated
eight years ago with an initial proposal that $3000 be paid for funeral
assistance for the donor. Critics argued, however, that the original amount
proposed appeared to be too much like offering cash for organs (PA, 2002;
Charatan, 1999).
In January 2004, the State of Wisconsin passed a law allowing living
donors to qualify for an income tax deduction in order to recoup donation
expenses such as wages lost, transportation costs, and child-care expenses
(Ethics, 2004; Napolitano, 2004; Silverman, 2004).
As part of a 2001 Gift of Life Initiative, the Secretary of HHS pledged
to promote a national medal of honor for organ donors (HHS, 2001). Critics
argue that providing such recognition for a donor is not really an incentive,
but merely an appropriate response to a very generous donation (Ethics,
2004; Delmonico, 2002).
41 The American Society of Transplant Surgeons (ASTS) supports funeral reimbursement or
charitable donation as a strategy to increase donation (Ethics, 2004; Arnold, et al., 2002).
74


Mandated Choice Model: Mandated choice would require every adult
to indicate a choice regarding organ donation on a drivers license or perhaps
on income tax forms; when that individual dies, a hospital would be required
to comply with the written choice. Unlike a conscription strategy, mandated
choice has an opt-out strategy, thus, this model strongly enforces the concept
of individual autonomy.
The model would require an enormous level of trust in the medical
system; individuals would have to feel confident that their personal medical
needs were being addressed regardless of their donation choice. In this
regard, surveys have indicated that up to 25 % of respondents indicate
concern that a doctor might not try as hard or do as much to save the life of
an assumed donor (Siminoff & Mercer, 2001; Siminoff, et al., 1996; Seltzer,
et al., 1994; Hessing & Elffers, 1986-1987).
The State of Texas tested a mandated choice policy during the 1990s.
The original intent of Texas House Bill 271 may not have been mandated
choice, but the wording was construed as such (Siminoff, et al., 1996).
Section llB(b)read, A statement of gift must (emphasis added) be executed
each time a driver's license or personal identification card is renewed,
reinstated or replaced. It was determined that the law required individuals to
choose a donor status when obtaining their drivers licenses because it forced
a yes or no choice to be made (Siminoff et al., 1996). When forced to
75


choose, almost 80% of potential donors chose not to donate organs (Ethics,
2004). The experience in Texas casts serious doubts on the utility of
mandated choice....Indeed, it seems that mandated choice has already been
put to the test and has failed (Siminoff, et al., 1996). The law has since been
repealed (Siminoff & Mercer, 2001).
Presumed Consent Model. Presumed consent is a procurement policy
in many European nations (Kennedy & Sells, 1998). With presumed consent,
organs are taken after death unless an individual has opted out or otherwise
specifically requested not to be an organ donor.
A central argument against this model is that the opt-out requirement
might prove to be an unfair burden for some individuals. There are concerns
that some may choose not to be organ donors for religious or cultural reasons
or others who may have language barriers or transportation issues. Thus, they
might find it challenging to go through a process of opting out (Siminoff &
Mercer, 2001).
Some advocates argue that it is a civic duty to donate organs once
they are no longer needed, i.e., after death. Implementation of a presumed
consent model would require that the public be educated to the point of being
very well informed about organ donation. Critics argue that this would be
difficult to achieve and probably more difficult to prove (Ethics, 2004; Hill,
et al., 1999).
76


Additional Legislative and Procedural Action
Ongoing organ procurement policy and procedural modifications
continue at both state and federal levels in efforts to increase the supply of
donor organs. The first of these efforts was a 1987 amendment to UAGA
intended to dismiss any doubt about the legitimacy of individual consent
(Kaserman & Barnett, 2002; Banks, 1995),42 to wit: An anatomical gift that
is not revoked by the donor before death is irrevocable and does not require
the consent or concurrence of any person after the donor's death.
Although many states have adopted some form of this amendment,
others continue to require family approval for deceased donation (Kaserman
& Barnett, 2002; Banks, 1995; Kessinger, 1990). It has been shown that
families are much more likely to consent to organ donation if they know that
the deceased had previously consented to organ donation on a drivers license
or donor card (Siminoff, et al., 2001). Critics argue, however, that it is more
important to respect the needs of the immediate family than override a choice
that may be in opposition to the intent of the deceased, asserting that abiding
by legally-binding consent may be upsetting to the families which, in turn,
42 This amendment includes a controversial presumed-consent provision authorizing coroners
or medical examiners to remove any body part from cadavers in their custody for
transplantation or therapeutic purposes if the officials have no knowledge of the decedent's or
relative's objection (Banks, 1995). Many of the state versions of the 1987 UAGA include
some form of a weaker presumed consent provision, usually restricted to the taking of the
cornea or pituitary glands. See COLORADO REV. STAT. § 30-10-621 (1987).
77


could lead to negative publicity (Mocan & Tekin, 2007; Mesich-Brant &
Grossback, 2005). Both critics and proponents alike agree, however, that
communication of donor intent is the key to family acceptance.
Routine inquiry and required request are also mandated by the UAGA
amendment. Routine inquiry stipulates that adult patients who are admitted
to a hospital be asked whether they are organ donors, and required request
authorizes a hospital representative to discuss organ donation with terminal
patients if there is no record of that patients wishes (Banks, 1995). Finally,
the amendment prohibits the sale of human organs and mirrors the federal
policy penalties, thus fulfilling an earlier NOTA Task Force recommendation
that state and federal laws have a unified purpose.
After more than a decade of experience with voluntary organ
donation, a 1997 National Organ and Tissue Initiative (NOTI), which focused
on known barriers to donation, created a multi-sector partnership43 to
promote organ donation among living as well as deceased donors, with
particular emphasis on improving communication about donor choice within
families (Shalala, 1998). The initiative also required the healthcare sector to
improve death reporting so that suitable deceased donors can be readily
identified, and established a procurement evaluation and reporting system.
43 Included among the partner organizations were the American Medical Association, the
American Bar Association, the U.S. Chamber of Commerce, and the American Red Cross.
78


Because of this single initiative, nationwide donations increased by 5.6 %
within one year.
A 2001 Gift of Life Initiative implemented a Workplace Partnership
for Life campaign that encourages employer/employee groups to join a
nationwide network that promotes organ donation; the initiative also led to
the design and use of a model organ donor card similar to an identification
card, and a pledge by the HHS Secretary to create a national medal of honor
for organ donors (HHS, 2001).
And, most recently, a 2003 initiative promotes best practices for
hospital-based procurement (HHS, 2003). Representatives of HHS, donor
hospitals and regional organ procurement agencies work to identify best
practices among hospitals with high donor rates and then share this
information with all other procurement facilities across the country.44
Commitment Challenge
Legally and ethically, the voluntary model of organ donation remains
the most acceptable and most widely supported form of procurement for the
44 An oft-cited donation success story is the Spanish Model over a period of ten years,
the rate of organ donation in Spain rose 146% to the highest rate of organ donation in the
world 33.6 donors per million people (White Paper, 2004). The success of this model is
attributed to specially trained physicians who work part-time as practitioners and part-time as
hospital transplant coordinators within a national health system that is a fundamentally
different one than the U.S. health system.
79


United States. Legislation and policy initiatives address the donor organ
disparity issue by providing opportunities for greater donation potential, but the
fact remains that donor rates are dependent on individual commitment. What is
at issue in this dissertation are ways and means to increase donor commitment.
For many years, public support for organ transplantation has been high
(Gallup, 2004, 1993, 1985; Childress, 2003; Partnership, 2000), but the rate of
individual commitment to organ donation has not equaled the rate of public
support. Today, ninety % of the U.S. population supports organ donation but
just over half of these individuals indicated donor intent on a drivers license or
donor card (Gallup, 2004).
Previous studies suggest that a commonality exists among individuals
who commit to organ donation frequently choosing to be organ donors
simply in order to help others (Childress, 2003; Siminoff, et al., 2001; Prottas,
1994; Gallup, 1993, 1985). The willingness to help others by becoming an
organ donor is widely assumed to be, above all else, an altruistic act.
Research prompting this dissertation found that among focus group
participants, the concept of altruism does matter in a decision regarding organ
donation, but the value, or personal benefit, of that decision for the donor is
important as well (Coalition, 2003). Other concerns included the issue of
incentives for donation, a sense of fairness in organ allocation, and an
understanding of the rules and regulations that govern organ donation.
80


This dissertation focuses on these five issues altruism, personal benefit, or
self-interest, incentives, fairness in allocation, and knowledge and their
significance as perceptual justification, that is, the objective or subjective
relevancy to rational preference-ordering, in a decision regarding organ
donation.
Summary
Organ transplantation is representative of medical and surgical
progress for public benefit. The technical advances are truly remarkable;
however, organ procurement, bound by law and public policy, is hard
pressed to meet the need for transplantable donor organs. A clearer
understanding of individual justification for organ donation within the
context of the extant donor model will provide new avenues for public
education efforts to improve donor rates.
The focus of this dissertation is the perceptual justification that
individuals adopt in a decision regarding organ donation which provides an
opportunity to consider an alternative commitment model for donor
awareness education. A more complete profile of individual intent emerges
by utilizing the theoretical approach of rational choice which is introduced in
the following chapter.
81


CHAPTER 3
LITERATURE REVIEW
Introduction
Organ donation relies on individual commitment fostered through
donor awareness education. The central theme of this educational effort is
the role of altruism in a decision regarding organ donation because it is
assumed that this gift of life is an inherently selfless, other-oriented
behavioral action derived from standards of benevolence. However, altruism
does not necessarily explain all behavior regarding the issue of donor
commitment as many individuals either decide against, or make no decision,
regarding donation.
The rational choice theoretical perspective is an alternative approach
for examining commitment issues. Generally speaking, rational choice
theory (RCT) is a way of looking at deliberations between a number of
potential courses of action in which rationality is used to decide which course
of action to take. Various models of rational choice have emerged since its
first rendering as a utility-based economic approach to assessment of action.
Modifications commonly are referred to as thin and thick variations of
82


rationality, with the traditional economic model defined as thin and all other
extended versions as thick. The thick versions, in turn, distinguish between a
narrow model with an egoistic, or self-interested,45 perspective, in the sense
of being interested only in ones own welfare, and a wide model that
assumes actions are based on all types of preferences including norms and
beliefs (Opp, 1999). A recent introduction to an interpretative rationality
proposes that belief dynamics, or an examination of ideational factors such as
norms and beliefs, be included in rational choice models (Yee, 2001) to
enhance their capability for assessment of behavioral action.
Although altruism currently is the central theme of a donor awareness
educational model, rational choice may prove to be a more comprehensive
frame with which to examine individual intent in a donor-recipient gift
relationship and, thus, provide new avenues of communication in donor
awareness education. Thus, an integrated rational choice model combining
assumptions of the narrow and wide versions with an interpretative
perspective is developed to examine the perceptual justifications that
individuals adopt in a decision regarding organ donation.
This chapter first reviews the concept of altruism to provide a better
understanding of its central role in organ donor commitment and donor
45 A distinction is made between the narrow-rational egoistic, or self-interested, preferences,
as described by Opp (1999) and the RCT universal assumption of self-interested utility
maximization.
83


awareness education. Next, a review of the rational choice literature
establishes the capabilities of this approach to examine the issue of donor
commitment and an integrated rational choice model is introduced which
combines assumptions of the narrow and wide versions with an interpretative
perspective for this examination. Finally, the public in the public policy
for organ procurement and transplantation is discussed.
Altruism
Altruism is the practice of placing others before oneself (Dahl, 1980;
Collard, 1978). It is considered a virtuous trait in many cultures and is
central to many religious traditions (Altruism, 2004). Auguste Comte, a 19th
century philosopher and founder of positivism, coined the word altruism to
articulate benevolent, as opposed to selfish, propensities (Delaney, 2003). In
his Catechisme Positiviste (1891/1852), Comte argued that altruism is a
behavior directed by instincts of benevolence because 1) we have a moral
obligation to serve the interest of others or the greater good of humanity,
2) we all are born with obligations of every kind, to those who came before,
to those who will follow, and to those who exist today, and 3) from birth,
these obligations increase and accumulate for some time before we can act on
our instincts of benevolence (Delaney, 2003).
84


Few social and political scholars subscribe to the purest form of
altruism, which demands that ones actions ought to further the welfare of
other people, ideally to the exclusion of ones own interests (Rosenstand,
2000; Collard, 1978). One illuminating exception is the work done by
Kristen Monroe (1996, 1991a, b) on the importance of altruism in the rescue
of the victimized Jews in Nazi-dominated Europe. Monroe (1996, 234)
argues that a universal bond existed between rescuer and victim and that
everyone is capable of this bond merely by virtue of their existence.
Furthermore, Monroe (1996, 234) maintains, altruistic behavior does not
arise from the dominance of reason over baser passions because the
altruists who were interviewed claimed to have had no choice but to help
others and neither familiarity nor empathy could account for their actions.
This work led to a perspective of pure altruism characterized by spontaneity
and choice as well as constancy and universality (Monroe, 1996, and 1991a).
More commonly, altruism corresponds to the view that humans
inherently possess compassion or a natural feeling of concern for others
(Rosenstand, 2000, 149). In this form, altruism usually means helping others
without expecting a reward, although it may well give rise to the internal
benefit of a good feeling, a sense of satisfaction, and improved self-esteem,
or it may represent a fulfillment of duty that may be imposed by religion,
ideology, or simply ones own conscience (Monroe, 1996, 143). This view
85


of altruism can be traced to Herbert Spencer, another 19th century philosopher
and political theorist, who is best known for having criticized utilitarian
positivism and advancing political thinking on natural rights. Spencer
conceptualized the relative right or least wrong approach to altruistic
behavior (Monroe, 1996; Dahl, 1980; Spencer, 1969/1850).
A review of the literature presents an array of meanings for altruism.
Although little research is documented, it is not an uncommon subject in the
social sciences. Frequently, the conceptualization of altruism is interchanged
with giving, sharing, cooperating, helping, and different forms of other-
directed behavior (Monroe, 1996, 6). Certain classical scholars, e.g.,
Machiavelli (1513), Hobbes (1651), and Bentham (1789), viewed the very
existence of altruism as a challenge to the widespread and dominant belief
that it is natural for people to pursue individual self-interest (Monroe, 1996,
6). In contrast, other classical scholars, e.g., Rousseau (1750), Smith (1759),
and Kant (1785), maintained that altruism (or a similar phenomenon by a
different name) is a basic part of human nature (Monroe, 1996, 239).
Although an individual can be outwardly altruistic in a practical
sense, the driving force may not be altruism. While an individual might
spend a lifetime helping others, the motive may be advancing his or her own
interests (Batson, et al., 2002; Gilbert, 1994). In the study of psychological
egoism, an individual who claims to act altruistically is thought to derive
86


great pleasure from helping others both from the motive and the resulting
benefit (Rosenstand, 2000). This theorem reflects on how individuals
volunteer their time and resources, but does not consider the motivations
behind the donation (Casebeer, 2002, 92, citing Batson, 1991, 1990, 1987;
see also Batson & Coke, 1981).
Self-rewards for altruism often are viewed as internal rather than
external benefits (Bar-Tal, 1985; Schwartz, 1977). In reciprocal altruism,
sympathy, which has a particular tendency to grow in proportion to the
gravity of a persons plight (Wright, 1994, 205, citing Trivers, 1971),
determines the level of gratitude that is in order, and the gratitude is a form of
repayment. Literature on charitable giving includes an impact philanthropy
model in which donors are motivated by their desire to make a difference, a
public good model in which donors are motivated by what their gifts
accomplish, and a private consumption model in which donors are motivated
by how giving makes them feel(Duncan, 2003, 2159). The latter approach
often is referred to as a theory of warm glow giving (Duncan, 2003;
Harbaugh, 1998; Andreoni, 1990).
An obligation to charity is derived from the three interconnected
concepts of justice (debbitum reddere, or rendering to each his due), equity
(equal treatment of equal cases), and fairness (the needs of each being met)
(Veatch, 1989, 31; see also Fletcher, 1985). At first glance, it could be
87