Review Essay
Michelle Goodwin. Black Markets: The Supply and Demand of
Body Parts. New York: Cambridge University Press, 2006. 294 pp. $30
cloth.
Abstract Black Markets: The Supply and Demand of Body Parts is an important
contribution to the body of scholarship and policy analysis about one of the most
difficult problems facing contemporary health policy, public health, and bioethics:
the fact that the demand for donor organs far outstrips supply. In this book, Michelle
Goodwin systematically reviews the general ways in which the United States’ current
organ-donation and transplantation system negatively affects potential donors and
recipients, particularly African Americans. She proposes solving these problems by
changing the current system that prohibits payment for organs to one that allows it.
However, I argue that the entire discussion of a market-based solution to the problem
of a shortage in supply in donor organs suffers from a flaw far greater than the inability to predict how such a market would work, because of a lack of reliable evidence
that an offer of compensation would be effective in changing the minds of people who
currently decline to donate the organs of their loved ones.
Black Markets: The Supply and Demand of Body Parts is an important
contribution to the body of scholarship and policy analysis about one
of the most difficult problems facing contemporary health policy, public health, and bioethics: the fact that the demand for donor organs far
I would like to thank Colleen Wisdom, Texas Tech University School of Law class of 2008, for
her research assistance.
Journal of Health Politics, Policy and Law, Vol. 33, No. 1, February 2008
DOI 10.1215/03616878-2007-049 © 2008 by Duke University Press
118 Journal of Health Politics, Policy and Law
outstrips supply (Taub et al. 2003; Langone and Helderman 2003). In
this book, Professor Michelle Goodwin systematically reviews the general ways in which the United States’ current organ-donation and transplantation system negatively affects all potential donors and recipients
and, in particular, African American potential donors and recipients. She
then proposes solving the problems she identifies by changing the current system, which prohibits payment for organs to one that allows it (11).
Throughout the book, Goodwin emphasizes the role of African Americans within the organ-donation system because, as she writes, “African
Americans . . . demonstrate a disproportionately high rate of organ failure
(and thus their demand) exceeds all American ethnic populations” (23).
She further notes that African Americans are a disproportionate source
for donor organs and are disproportionately less likely to receive an organ
if they suffer organ failure. Finally, she explains that a substantial barrier
to an incentive-based system is the argument that such a system would be
immoral because it would be similar to the historic slavery imposed on
African Americans in the United States. For these reasons, Black Markets
focuses on the different ways in which African Americans are harmed by
the current system and how they would stand to directly benefit from a
system that includes compensation.
In advocating for a system that compensates organ donors, one of
Goodwin’s strongest points is that it is futile to argue against introducing
compensation into the organ-donation system because it already exists in
the form of an international black market for organs (48 – 49). It is this
black market to which the title of Goodwin’s book refers. The title, however, does double duty by also referring to an analysis of the specific role
of African Americans as organ donors and recipients.
Goodwin maintains that the severe shortage of donor organs compels a review of the current system, in which donation is based purely
on altruism without the possibility of any financial benefit to donors or
their families (11). She concludes that in the face of this need, objections
to an incentive-based donor system raised by scholars, doctors, and other
commentators are an insufficient basis for retaining the current and, she
asserts, broken system (10). The book’s scope is therefore broader than
bioethics, health policy, or law; rather, it is a multidisciplinary study of
how a people brought to the United States against their will as slaves continue to suffer oppression through the current system of organ donation
and distribution. Her work is further distinguished by her own qualitative
research, in which she has interviewed African Americans about their
attitudes and beliefs concerning organ donation.
Books 119 The book is organized into three parts: “Understanding the Strain on
Altruism,” which details the problems with the current system; “Legal
Frameworks and Alternatives,” which explains the current complex mix
of laws that controls how organs are obtained and distributed; and “Critiquing the Slavery and Black Body Market Comparison,” which directly
addresses two of the major objections to an incentive-based system: that
paying for organs is, in general, a form of slavery and that, as a form of
slavery, it is particularly insulting to African Americans as the victims of
the United States’ historical practices of slavery.
In this essay, I highlight some of the major arguments made in this book
and also offer my own thoughts on why I agree that reliance on altruism
has failed to produce a sufficient supply of organs. I do not think that
offering compensation will increase the supply if we do not pay closer
attention to the distrust of the process expressed by the families who currently choose not to donate. Although informed and inspired by a close
reading of Goodwin’s book, these thoughts are entirely my own and are
based on my professional experiences as a medical-school and law-school
professor with the opportunity, through my work, to observe closely the
organ procurement and distribution system as it currently exists in the
United States. It would be fair also to say that I also speak from my experience as a family member of both an organ donor and of a person who
recently received a lifesaving cadaveric kidney transplant.
Goodwin sees the shortage of donor organs as the direct result of the
United States’ procurement and distribution process that prohibits any
form of compensation for donors or their families (39 – 40). One of Goodwin’s goals in this book is to challenge “commentators [who] based their
opposition to markets in organs on the theory that organ selling resembled
slavery” (xi). She criticizes the argument that compensating organ donors’
families would be the moral equivalent of treating a human being as property and therefore the moral equivalent of slavery (197n23). In response
to ethicists such as Leon Kass who raise these objections, Goodwin offers
two major arguments: first, that, unlike slavery, organ donation is a voluntary process and, second, that the human body is already treated as
property in so many ways that to reject an incentive-based system because
of distaste for commodification is to make a distinction without substance
(197).
Goodwin is vehement in her rejection of the argument that compensating African Americans for their organs is inherently racist. Instead, she
writes that a “market in cadaveric body parts will not be the cause of
racial discrimination in America although it might reveal patterns of dis-
120 Journal of Health Politics, Policy and Law
crimination, which currently exist. Creating a transplantation system that
promotes equity for all Americans is critically important” (193).
In further rebutting arguments that a market for organs is the equivalent
of slavery, Goodwin points out that the vocabulary of organ donation and
that of slavery are quite different and reflect real differences between the
two systems. “The villainy of slavery,” she writes, “is best characterized
by the creation of a chattel system wherein Black men, women, and children were explicitly and exclusively exploited; stripped of their humanity,
tortured, bred, denied legal protection, forbidden educational instruction
and religious expression” (198). She argues that to analogize an incentivebased organ-donation system to slavery, which involved the capture and
captivity of African Americans through physical force, is to assume that
African Americans are not competent to make decisions about their own
bodies (202).
Goodwin reminds the reader that African Americans already approach
the medical establishment with mistrust because of the past abuses they
have suffered (52; see also Randall 1996). She notes the observation of
one of her interview subjects, a young African American banker who,
when asked why African Americans are reluctant to donate organs, stated
that they know “they are not going to them” if they need a transplant (52).
His impression is consistent with the reality that African Americans are
disproportionately less likely than Caucasians to receive a donor organ.
Finally, Goodwin asserts that African Americans could be direct beneficiaries of a market-based system. She notes that, given the difficulty
African Americans often have in finding a matching organ, if compensation increases the number of African Americans donating organs, there
will be more available for African Americans in need (198).
In order to fully appreciate Goodwin’s arguments that reject altruism, it
is important to understand some of the history of how the current system
developed (Shapiro et al. 2003: 1176 – 1207; Arthurs 2005: 1104 – 1107).
As with many medical technologies, in its early days, organ transplantation was a risky process with only limited success (Arthurs 2005: 1104).
However, advances in medical technology over the past fifty years have
turned transplantation into an almost routine procedure that offers the
very real possibility of a cure for a wide variety of what would otherwise
be fatal conditions. Unfortunately, for the most part, the only way for a
patient in need to receive organ transplantation is through the voluntary
relinquishment of the organ by the family of a dead person (Caplan 1992:
149). As ethicist Arthur Caplan (ibid.: 159) so aptly put it, “the entire practice of organ transplantation rests upon a very fragile base — the willing-
Books 121 ness of the public to support the procurement of organs for transplantation
to others.” Until very recently, U.S. law required that the only eligible
donors were individuals who had suffered massive, irreversible damage
to every aspect of their brain (Menikoff 2006). As a result of the injuries,
these individuals were left with no brain function whatsoever and no hope
for recovery.
When patients were in that condition, the law allowed hospitals to ask
individuals’ families or other legal decision makers to agree to the organs
being removed before the patients were disconnected from life-support
machines. It was expected that families would be happy to give what
numerous public-service advertising campaigns described as “the gift of
life” (Calandrillo 2004: 117). Faced with the relative rarity of a patient
meeting the requirements for brain death and still having transplantable
organs, attention is increasingly being directed toward “non-heart-beating cadaver donors” (Lobas 2006: 476). There are individuals who are
not brain-dead, but who, when removed from life support, suffer cardiac
arrest. This process is usually described as the “Pittsburgh protocol”
(ibid.: 497). If organs are removed shortly after the arrest, usually within
two minutes, they remain viable for transplantation (ibid.: 497).
Although some families do, under the current system, agree to donate
either because of their own beliefs or because of respect for decisions
made in advance by potential donors, more than 50 percent of families
refuse donation (Taub et al. 2003). The result has been a dramatic shortfall
between need and supply (Watkins 2005; Koh et al. 2007; Langone and
Helderman 2003). According to the United Network for Organ Sharing
(UNOS), the federally funded agency that oversees and tracks the process
of organ donation, as of 5:46 p.m. (EST), May 6, 2007, there were 96,381
people in the United States on the waiting list for a donor organ. According
to the UNOS Web site, in contrast, from January to February 2007 there
were 4,425 transplants performed in the United Sates with organs from
2,274 donors. As Goodwin writes, “Americans live with the understanding that thousands will die each year because too few organs are donated
in our present procurement system. Our demand for organs is soaring and
the supply is very low. How we resolve this conundrum will reflect our
values for autonomy, human dignity, and life-saving efforts” (xi).
The reluctance of the public to donate is an ethical problem, not just a
public health issue, because the method by which the United States has
chosen to regulate organ donation and distribution is based on a moral
belief that donation should be based on altruism and receipt of organs
should be based on need. Therefore, it has so far been prohibited to offer
122 Journal of Health Politics, Policy and Law
any financial incentive for registering as a donor or to families of individuals who choose to allow donation after death. Black Markets suggests that
this reliance on altruism is the cause of the current organ shortage and
proposes introducing market incentives. While these incentives may work,
it is my belief that no solution to the reluctance of Americans to donate
can work until this reluctance is taken seriously and the families who
choose not to donate organs are listened to with respect.
The divide between organ-donation advocates and families making
these bedside decisions is, in my opinion, a social wedge issue, like abortion, with advocates for organ donation viewing the refusal of families to
place their loved ones’ unneeded organs into the donor pool as, at best,
based on ignorance and superstition and, at worst, selfishness. As public
information campaigns, enlistment of the support of almost every religion,
and aggressive protocols designed to coerce reluctant families have failed,
the focus of increasing organ donation has turned to compensation (Salim
et al. 2006). If families who refuse to donate are, indeed, selfish, then
what better way to encourage them to change their minds than by paying
them money (Watkins 2005)?
The consistent refusal to donate by a large portion of the potential organ
pool has frustrated, challenged, and in many cases, angered the medical
community and the growing constituency of Americans in need of a transplant for themselves or a loved one (Arthurs 2005). A recent article by a
law student expresses typical disgust at the waste of organs, stating that,
although seventeen Americans die every day for lack of a donor organ,
it is “unlikely that any of the obituaries or eulogies mentioned that the
dearly departed died for want of an organ that was instead used to. . . .
feed worms” (Arthurs 2005: 1101). Finally, the evidence available about
whether or not financial compensation would alter a family’s decision
not to donate organs is not encouraging (Rodrigue, Cornell, and Howard
2006). Despite the findings of “a recent world-wide survey of members
of the International Society for Heart and Lung Transplantation (ISHLT)
[that] over half of the 739 respondents believed that indirect compensation would have a positive impact on organ donation” (ibid.: 1254), their
predictions were not supported by a recent study conducted by interviewing next-of-kin at a major medical center who had refused donation. In
this study, “overall, 91.4% of participants reported that financial incentives would not have influenced their decision to consent or not consent to
donation at the time of their family member’s death” (ibid.: 1252). Worse,
6 percent of kin who had consented to donation indicated that they “would
not have consented to donation if approached about financial incentives”
Books 123 (ibid.: 1252). This is consistent with a 1993 Gallup poll of 6,127 people, in
which only 12 percent “reported that they would be more likely to donate
their own organs or those of a deceased family member in response to
financial incentives” (ibid.: 1254).
Perhaps more telling than the actual results of the survey is the unrealistically positive way in which the authors described the results. Despite
the overwhelming rejection of the idea of financial incentives, the authors
of the study concluded that “consistent with cognitive dissonance theory,
decision justification processes, and confirmation biases, it is likely that
most donors and nondonors have already justified their donation decision
and altering that decision retrospectively on the basis of one additional
factor (financial incentive) might be inconsistent” (ibid.: 1254). In other
words, they developed a theory that nullified the actual study results by
concluding that the next-of-kin were incapable of accurately predicting
what they would have done if they had been offered financial incentives.
By doing this, they were able to justify the view expressed by the transplant surgeons that families who chose not to donate were motivated by
money (ibid.: 1254). Despite this valid effort to uphold their apparently
preexisting beliefs in the face of contradictory facts, the authors were
forced to conclude that, “collectively, findings from our study and others
indicate that financial incentives offered to next-of-kin decision-makers
are not likely to lead to increases in deceased donation consent rates”
(ibid.: 1254).
While one or two studies are not sufficient to conclude whether or not
compensation would significantly increase donation rates, it would be
foolish to reject the consistent evidence that families have concerns about
donation that would not be affected by money. If this, indeed, is the case,
then the medical community needs to set aside their preconceived ideas
that people who do not donate are greedy and perhaps confront the possibility that the issue is a lack of trust fostered by an accurate perception
by the families of potential donors that their concerns about donation are
not respected by the medical staff. If this is the case, then efforts to promote donation that involve deception, no matter how well intentioned, are
doomed to failure.
The process of organ procurement and distribution in the United States
is strictly controlled by a combination of federal and state laws. The relevant federal law is the National Organ Transplant Act. Every state has
passed some version of the Uniform Anatomical Gift Act of 1987, and
several states have already passed the 2006 version of this law. The most
recent regulations by the Department of Health and Human Services are
124 Journal of Health Politics, Policy and Law
sometimes referred to as the “Final Rule” and provide federal oversight of
organ procurement organizations, which are charged with engaging in “a
systematic effort to acquire all usable organs from potential donors, preserve these organs, and arrange and transport them to transplant centers”
within their designated areas (Hurley 2004: 127; see also Robinson 1999:
1030; Hawley 1991: 1103 – 1105). These regulations have been described
as an effort to “satisfy two competing goals: the preservation of life and
the reduction of suffering on the one hand, and the preservation and protection of the highest ethical and moral standards demanded by American
society on the other” (Flamholz 2006: 330). Indeed, Goodwin notes that
there is a contingent of commentators who oppose any introduction of
compensation into the organ system as, at best, unethical and, at worst, a
complete devaluation of human life (197).
However, as attempts to increase donation through moral suasion and
education have failed and as patients desperate for organs have turned to
unregulated sources of organs in third-world countries, there has been
an increasingly loud call for a legal and legitimate system of providing
financial incentives to potential donors (10 – 12; Wigmore and Forsythe
2004).
Goodwin’s proposal for change is to adopt a system that would allow
both altruistic donation and, for those who do not choose to donate out of
altruism, a method of compensation. She describes this as a “transparent,
hybrid system that supports altruistic procurement” but that allows the
market to play a role by recognizing that organs are a commodity with a
monetary value (21). She defines her proposal as a market model, which
“would allow for individuals to negotiate for organ transfer upon death.
Family members or a decedent’s estate could be compensated for organ
donations, as well as charitable organizations” (22). It does not diminish Goodwin’s substantial accomplishment in presenting this comprehensive analysis of the organ-donation system and detailed explication of its
flawed reliance on altruism that she spends little time describing her proposed solution. She makes no claim to offer a comprehensive policy, but
rather she asserts her goal as describing why the altruistic system is not
working and why concern for the negative effects on African Americans is
misplaced and should not be a barrier to the development of a policy that
includes compensation. Nevertheless, given how little detail is provided,
it is not really possible to evaluate Goodwin’s proposal or to compare it
effectively to other proposals for a system that includes compensation.
For example, there are an abundance of examples of how markets have
worked in other areas of health care that suggest that once payment is
Books 125 introduced, altruism will no longer play a major role. Goodwin discusses
both the international black market and the market for gametes — sperm,
eggs, and embryos — for those seeking assistance in reproduction but does
not explain why altruism would remain a part of her market when this has
not been true for gametes or black market organs (see Daar 2005).
Rather than recapitulating the substantial existing body of literature
about market-based approaches to organ donation, I will just make a few
observations on the implications of the proposed plan. Although Goodwin
disclaims any attempt at specifics, she is quite clear that, in her model,
the financial incentive to donors will come directly from those in need of
organs. This immediately distinguishes it from other forms of incentive
models, in which the incentives come from a central authority such as the
government rather than from the individuals who benefit. Since the current organ-donation system is already run by the federal government, it
would seem that the least dramatic change would be for the government
to offer standard compensation to donors. Indeed, many articles have proposed an incentive in the form of a tax deduction (Calandrillo 2004: 111).
An important feature of an incentive administered by a third party is that
it moderates the effect of the market. Allowing direct commerce between
buyers and sellers strips the organ procurement process of any oversight,
and it seems to me that organs will inevitably be priced at their market
value. This is exactly what has happened in the market for gametes (Daar
2005).
A discussion of the ethics of creating a market for organs also requires
addressing the fact that there is no comprehensive system to finance organ
transplantation or any other type of health care in the United States.
According to early release estimates based on data from the January – September 2006 National Health Interview Survey, 43.5 million adults
younger than age sixty-five and between 8 and 10 million children
younger than age eighteen are uninsured and hence lack the resources to
obtain basic health care let alone an organ transplant (National Center for
Health Statistics, Centers for Disease Control and Prevention 2006). Thus,
although it may not be possible to directly purchase an organ, money is
very much part of the organ-donation system because without the means
to pay for the operation, an individual, no matter how sick, is not a transplant candidate.
Therefore, organ transplantation is only available to people who can
afford, usually through insurance, to pay the medical bills. Since nearly 20
percent of the American public is without any form of insurance, they are
automatically excluded from the benefit of a transplant. Even the insured,
126 Journal of Health Politics, Policy and Law
however, will suffer if the price for organs rises so high that insurance
companies refuse to provide coverage. While it is possible that, once compensation is widely available, the price of organs will fall, this would do
nothing to help the uninsured with the cost of the operation. Therefore, a
market for organs would not change the current inequalities inherent in
the present U.S. health care system.
Finally, given what we know about markets, if the need for compensation occurs because altruism is ineffective in producing enough donors
now, it is difficult to imagine how altruism will be able to survive when
organs take on their market value. Although there may be people who
donate now out of altruism, there is no reason to think that they would
forgo compensation if it were available.
In my opinion, the entire discussion of a market-based solution to the
problem of a shortage in supply in donor organs suffers from a flaw far
greater than the inability to predict how such a market would work. This
flaw is the lack of reliable evidence that an offer of compensation would be
effective in changing the minds of people who currently decline to donate
the organs of their loved ones. Although it is always difficult to get accurate information from people about what would or would not change their
minds, this book does not cite any studies showing that people would indeed
be more likely to donate if offered money. I believe that this flaw, which is
common to all arguments for a market-based system, comes from a failure
to take seriously the objections that people give for not donating.
One of the great strengths of Black Markets is Goodwin’s decision to
conduct research and ask a segment of the available donor pool, African
Americans, why they are reluctant to donate. The answer they give her is
based on their mistrust of the medical system. This mistrust is so extensive that Goodwin makes the observation that “systems that are competent
but lack group confidence and buy-ins are . . . doomed to fail and clearly
those that lack participant confidence ultimately fail” (47). Goodwin suggests that this lack of trust extends beyond the African American community. She points out that “the most recent Gallup Poll on organ donation explained that although over 85 percent of Americans approved of
organ donation, only 20 percent were registered donors,” and she suggests
that “the reluctance to donate organs could be attributed to the breach of
confidence and lack of trust in the current transplantation and procurement systems” (48). Although the focus of her book is the specific lack of
trust shown by African Americans in the existing organ procurement and
distribution system, the Gallup poll she cites and numerous other polls
indicate that Americans know about the benefits of organ transplantation
Books 127 and have a general awareness of what it means to be a donor. Despite years
of public-service campaigns, Americans still do not want to donate their
organs or those of their loved ones (see Callender and Hall 2001: 171;
Fauci 2001: 55n7).
At this point, I am going to express a view with which many would
disagree strongly and that is completely my own and not Goodwin’s. One
of the themes of Black Markets is the marked and understandable mistrust
of the medical profession by African Americans. While many reasons
for this mistrust of the profession in general are specific to the African
American experience, I believe that on the topic of organ donation this
mistrust is common to the entire spectrum of the U.S. population and is,
at least in part, fueled by the medical community’s zealous commitment
to organ donation as an unquestionable good and an overwhelming priority. For example, Goodwin’s research finds that the suspicions African
Americans have about the process of organ donation are consistent with
other research done with African Americans (e.g., Callender and Hall
2001: 171) but, interestingly, are not very different from the general mistrust with which the American public views the process, as cited on the
USA Today Web site regarding black organ-donation levels (Perry 1999:
184; Spellman 2006: 376).
Public opinion research shows consistently that many Americans mistrust the fairness of how organs are distributed (Spellman 2006: 376). A
market-based system would address this concern, because the transfer
from donor to recipient would be a direct transaction between buyer and
seller. It less clear, however, how a market will affect the concern Americans feel about donation. Many Americans express a belief that they will
receive less medical treatment if they are seen as potential organ donors
(ibid.: 376). Although this concern is dismissed vehemently in numerous public-information campaign materials, its persistence requires that
any attempts to increase the supply of organs take seriously the concerns
Americans have about donation. A close reading of the medical, legal,
and bioethics literature regarding organ donation combined with my personal experience of how donation is handled does not show any evidence
that hospitals are less aggressive in providing lifesaving care to potential
donors. However, from the perspective of an outsider with the opportunity
to be a close observer of the medical profession, I believe that the perception that engenders this mistrust is very much fostered by a combination
of the medical necessity to act quickly in order to preserve organs and the
zealous commitment of the profession to the belief in organ donation as
an ultimate good.
128 Journal of Health Politics, Policy and Law
I believe that the general public, for whom the decision to donate loved
ones’ organs comes at a time of intense grief and shock, perceives this
need for rapid intervention as an expression of medical staff’s belief that
it is a waste of their time and resources to care for patients when there are
more deserving people who could benefit from their organs.
One practice that contributes to this perception is the medical profession’s belief that it is acceptable to run tests and administer drugs in preparation for donation without asking families’ permission. These preparations are sometimes labeled “aggressive donor management” (ADM).
While it is certainly possible to conduct the research necessary to determine how often hospital staff ask permission to initiate ADM, a review
of a recent article supports my belief that the family is often not asked for
consent. In a study published in the Journal of Trauma, the authors claim
that, although their ADM protocol was highly successful in preserving
organs, it did not increase the number of donations (Salim et al. 2006).
Specifically, the authors note that “despite the significant reduction in
donors lost . . . the conversion rate . . . remained low at 41.2% . . . because
nearly 40% of families refused donation” (ibid.: 431 – 432). The article
concludes that “to improve conversion rates, we have to improve our methods of approaching and educating families” (ibid.: 432). Although the article does not specify whether families were asked permission before the
ADM was initiated, the fact that over 60 percent of the families eventually
refused donation indicates that they were not asked in advance. Although
it is impossible to make definite conclusions without more information, it
stands to reason that families who chose not to donate their loved ones’
organs would not have consented to procedures intended to preserve those
organs for transplantation. This report is, unfortunately, consistent with
anecdotal reports that medical staff do not ask permission either to do the
blood tests necessary to screen and determine a patient’s eligibility to be
a donor or to perform ADM once eligibility is established.
Whether viewed from the perspective of law or ethics, these deceptions
are wrong and, worse, even though many families may not be aware of
what has been done, such practices add to the atmosphere of distrust. The
failure to ask permission is often rationalized by the explanation that consent is not needed because the family has already consented to treatment.
This is incorrect. While initial consent to treat the patient may encompass
the range of routine tests necessary to achieve treatment goals, a test to
determine suitability for donation or the administration of medications to
preserve organs for donation are not treatments. They are therefore in a
completely different category from those tests and interventions intended
Books 129 to benefit the patients. In legal terms, actions taken for purposes of donation are beyond the scope of the consent given by families for treatment.
Not only are these actions illegal but they violate the most basic principles of medical ethics. An incompetent, unconscious, patient’s autonomy
is held by his or her family. To act without their permission is ethically
the same as acting without the patient’s. This fundamental violation of
autonomy is made more serious by the obvious fact that nothing done in
pursuit of organ donation is being done to benefit the patient. Although
perhaps it can be argued that the patient is “beyond harm,” this, too, is
the family’s decision and not one for a doctor or team of doctors to make.
Even when patients have been declared brain-dead, decisions about what
happens to their corpses should be made by the families rather than by
hospitals or society.
I often receive criticism when voicing these views in medical settings
because some claim that I do not understand that these measures are taken
to make things easier for the family. For example, if the blood tests indicate the patient is ineligible to be a donor, the family does not have to
be “bothered” with the request. In the case of interventions to preserve
organs, I have been told that it often occurs that, if a family is asked for
permission, they will refuse. Since they may regret this refusal later, the
staff is actually acting in their best interests by not asking. While sometimes these unilateral actions may be taken out of genuine concern for a
grieving family, they in fact exhibit the utmost disrespect for the family’s
right to make decisions for themselves and can only contribute to the perception that the medical staff is using their loved one as a means to what
they see as a more important end. How can a family trust staff that has
deceived them?
In fairness to the dedicated medical staff who must, by law, make all
reasonable efforts to obtain permission to procure organs, their perspective is and must be different from the individual family’s. They know that,
despite all efforts, the patient is beyond treatment, and they also know the
lifesaving potential of an organ transplant. The organs within dying or
dead patients are of no use to them and have lifesaving potential for many
others. Yet, within the structure of current U.S. law and medical ethics,
it is not possible to put the good of the many over the expressed interests
of individual patients’ representatives. If it is illegal to procure organs
without permission, then it is, at best, wrong to procure them through
deception. The loss of potential donated organs is a loss to potential recipients, not to decedents or their families. To describe the current U.S. law
is not to defend it. In many European countries, individuals and families
130 Journal of Health Politics, Policy and Law
are indeed thought to be obligated to donate because of their roles as
members of society. These expectations are expressed in laws that presume a consent to donate absent a definite statement by the patient. On the
other hand, every indication we have, from polling data to actual behavior,
shows that Americans are comfortable with the current laws that prohibit
donation without consent. Indeed, in a functioning democracy, laws are
the best reflection of the will of the majority.
I believe that the only way to increase supply is to ask and then listen
to people who choose not to donate. By choosing to blame the shortage of
organs on the ignorance, superstition, or selfishness of those who refuse
to donate, we have made it difficult, if not impossible, to reach agreement
as a society about how to achieve a solution.
When asked, many people express cultural or religious concerns about
the integrity of the body or visceral fears of not receiving lifesaving treatment because of a doctor’s judgment that a patient is of more value as an
organ donor than as a recipient of care. These statements have led almost
every organized religion to issue statements that their creed advocates the
acceptability, desirability, or even obligation to donate organs. Yet these
statements have not resulted in an increase in donation. Given this reality,
it would be foolish to assume that refusal to donate is based on the public’s
ignorance of the tenets of their own chosen religions. Rather, we must
conclude that these concerns are so deeply held that they are beyond the
reach of written doctrinal clarifications.
It has been speculated that the Victorian craze of belled coffins was
spurred by the Industrial Revolution, because machinery sometimes produced electric shocks that sent workers into deep comas from which they
might awake hours or days later. Whether or not this is the case, certainly
the mystery of death has been a factor in human existence from the very
beginning and to think that its mysteries can be tamed by declarations
of clergy or doctors is unrealistic. We must start understanding refusal
to donate by appreciating that the occasion for donation is a tragedy
for the family that faces the unexpected and untimely death of a loved
one — often a child.
Moreover, and more to the point in relation to this book, it is not surprising that this conflict has taken on racial, ethnic, and classist characteristics. The very language of the debate exemplifies division. People who
decline to donate organs are characterized as, at best, ignorant and, at
worst, selfish. Indeed, the very concept of increasing the supply of organs
by compensating families of donors implies that they are motivated by
Books 131 personal financial gain rather than a concern for the well-being of society.
Yet who defines society?
The problem of communication is made worse because the most vocal
lay proponents of donation are recipients of donor organs or their families.
While sickness knows no racial or economic boundaries, the structure
of the health care system in the United States is such that those who are
able to have transplants are, for the most part, those with employer-based
health insurance. Taken together, doctors and organ recipients increasingly do not reflect the racial, ethnic, or economic profile of most residents
of the United States.
So far, no intervention has succeeded in closing the substantial and
growing gap between the demand for donor organs and the supply. Black
Market addresses this problem by urging that the families of potential
donors be compensated. Although this would be a radical shift from the
current system of donation based on altruism, Goodwin argues that it
is unrealistic not to make such a change because organs have already
become a marketable commodity on the international black market. She
also objects that compensation is a form of slavery and the additional
injustice to African Americans is misplaced and patronizing, because
African Americans themselves would be the direct beneficiary if more
organs were available.
Although the evidence available does not support the conclusion that
offering compensation would radically change the rate of organ donation
in the United States, it is my belief that Goodwin does a thorough and convincing job of proving her case that the shortage of donor organs compels
a trial of a market-based system. It may also be true that her specific study
of African Americans and their attitudes toward donation shows that compensation is at least a step in the direction of reestablishing trust. Perhaps
if potential donors believed that their loved ones’ organs were valued, they
would be more inclined to donate.
However, I also believe that while compensation may be helpful, the
root causes of Americans’ reluctance to donate organs are yet to be fully
identified and until they are, there cannot be an effective solution. The
medical community, including organ-donation advocates, must become
more aware of how their failure to include families in decision making
about organ donation contributes to the atmosphere of mistrust that provides at least part of if not the whole explanation for low donation rates.
As the United States continues to become more culturally, ethnically,
and racially diverse, it is likely that more and more people will share
132 Journal of Health Politics, Policy and Law
the beliefs of African Americans that a largely Caucasian medical staff
does not value their lives as much as they might someone from their own
background. In that case, financial compensation could be seen less as an
incentive for families to donate than as a barrier to medical staff’s premature withdrawal of care and overhasty declarations of imminent death.
Goodwin’s book is a valuable contribution to the literature because of its
comprehensive overview of the current system and its flaws. It should also
play an important role in laying to rest the objection that compensating the
families of organ donors is the moral equivalent of slavery and therefore
not a possible solution to the shortage of organ donors.
Jennifer S. Bard, Texas Tech University
References
Arthurs, S. 2005. No More Circumventing the Dead: The Least-Cost Model Congress Should Adopt to Address the Abject Failure of Our National Organ Donation
Regime. University of Cincinnati Law Review 73:1101 – 1130.
Calandrillo, S. P. 2004. Cash for Kidneys? Utilizing Incentives to End America’s
Organ Shortage. George Mason Law Review 13:69 – 133.
Callender, C. O., and M. B. Hall. 2001. The Dilemma of Organ and Tissue Transplantation. In Health Issues in the Black Community, ed. R. L. Braithwaite and S. E.
Taylor, 167 – 188. San Francisco: Jossey-Bass Publishers.
Caplan, A. L. 1992. If I Were a Rich Man Could I Buy a Pancreas? And Other Essays
on the Ethics of Health Care. Bloomington: Indiana University Press.
Daar, J. F. 2005. Reproductive Technologies and the Law. Newark: LexisNexis Press.
Fauci, C. A. 2001. Racism and Health Care in America: Legal Responses to Racial
Disparities in the Allocation of Kidneys. Boston College Third World Law Journal
21:35 – 67.
Flamholz, D. I. 2006. A Penny for Your Organs: Revising New York’s Policy on
Offering Financial Incentives for Organ Donation. Journal of Law and Policy
14:329 – 375.
Hawley, C. K. 1991. Antitrust Problems and Solutions to Meet the Demand for Transplantable Organs. University of Illinois Law Review 1991:1101 – 1133.
Hurley, J. L. 2004. Cashing in on the Transplant List: An Argument against Offering
Valuable Compensation for the Donation of Organs. Journal of High Technology
Law 4:117 – 137.
Koh, H. K., M. D. Jacobson, A. M. Lydd, K. J. O’Connor, S. M. Fitzpatrick, M. Krakow, C. M. Judge, H. R. Alpert, and R. S. Luskin. 2007. A Statewide Public Health
Approach to Improving Organ Donation: The Massachusetts Organ Donation Initiative. American Journal of Public Health 97:30 – 36.
Books 133 Langone, A. J., and J. H. Helderman. 2003. Disparity between Solid-Organ Supply and
Demand. New England Journal of Medicine 349:704 – 706.
Lobas, K. 2006. Living Organ Donations: How Can Society Ethically Increase the
Supply of Organs? Seton Hall Legislative Journal 30:475 – 507.
Menikoff, J. 2006. The Importance of Being Dead: Non-Heart-Beating Organ Donation in Organ and Tissue Transplantation. In Organ and Tissue Transplantation, ed.
D. P. T. Price, 13 – 30. Aldershot, England: Ashgate.
National Center for Health Statistics, Centers for Disease Control and Prevention.
2006. National Health Interview Survey. www.cdc.gov/nchs/about/major/nhis/
quest_data_related_1997_forward.htm (accessed August 14, 2007).
Perry, M. M. 1999. Fragmented Bodies, Legal Privilege, and Commodification in Science and Medicine. Maine Law Review 51:169 – 210.
Randall, V. R. 1996. Slavery, Segregation, and Racism: Trusting the Health Care System Ain’t Always Easy! An African American Perspective on Bioethics. St. Louis
University Public Law Review 15:191 – 235.
Robinson, S. E. 1999. Organs for Sale? An Analysis of Proposed Systems for Compensating Organ Providers. University of Colorado Law Review 70:1019 – 1050.
Rodrigue, J. R., D. L. Cornell, and R. J. Howard. 2006. Attitudes toward Financial
Incentives, Donor Authorization, and Presumed Consent among Next-of-Kin Who
Consented vs. Refused Organ Donation. Transplantation 81:1249 – 1256.
Salim, A., M. Martin, C. Brown, P. Rhee, D. Demetriades, and H. Belzberg. 2006.
The Effect of a Protocol of Aggressive Donor Management: Implications for the
National Donor Shortage. Journal of Trauma 61:429 – 435.
Shapiro, M. H., R. G. Spece, R. Dresser, and E. W. Clayton. 2003. Bioethics and Law:
Cases, Materials, and Problems. 2nd ed. St. Paul, MN: Thomson/West.
Spellman, D. 2006. Encouragement Is Not Enough: The Benefit of Instituting a Mandated Choice Organ Procurement System. Syracuse Law Review 56:353 – 381.
Taub, S., A. H. Maixner, K. Morin, and R. M. Sade. 2003. Cadaveric Organ Donation:
Encouraging the Study of Motivation. Transplantation 76:748 – 751.
Watkins, C. M. 2005. A Deadly Dilemma: The Failure of Nations’ Organ Procurement
Systems and Potential Reform Alternatives. Chicago-Kent Journal of International
and Comparative Law 5. www.kentlaw.edu/jicl/articles/spring2005/s2005_christy
_watkins.pdf.
Wigmore, S. J., and J. L. R. Forsythe. 2004. Incentives to Promote Organ Donation.
Transplantation 77:159 – 161.