Explaining individual level support for organ procurement policy

The Social Science Journal 50 (2013) 426–437

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Explaining individual level support for organ procurement policy Stephen J. Ceccoli a,∗ , Roland A. Glean b,1 a b

Department of International Studies, Rhodes College, Memphis, TN 38112, USA International Services, Midwestern State University, Wichita Falls, TX 76308, USA

a r t i c l e

i n f o

Article history: Received 1 January 2013 Received in revised form 22 July 2013 Accepted 23 July 2013 Available online 13 August 2013

Keywords: Organ donation Transplantation NOTA UAGA Public opinion

a b s t r a c t The demand for human organs for transplantation – both from live and deceased donors – has become a public health issue in the United States, as thousands of Americans die each year due to the lack of a needed transplant. The current policy basis for organ procurement is voluntarism as federal organ procurement policy, based on the 1984 National Organ Transplant Act (NOTA), prohibits the exchange of human organs for “valuable consideration.” While an increasing number of policy analysts, including some ethicists, have advocated for financial incentives to induce more donations, a variety of factors – such as the legislative status quo, ongoing ethical concerns, and uncertain public support – have resulted in little use of financial incentives. We argue that a better understanding of public opinion is an important prerequisite for any move toward the use of financial incentives. Consequently, we develop and test a model to explain individual level attitudes toward legalizing and regulating the sale of human organs for transplant. We find that political ideology, gender, age and geographic region are important predictors of support. © 2013 Western Social Science Association. Published by Elsevier Inc. All rights reserved.

“The enormous gap between the number of people needing organs and the pitifully low supply brings out both the best and the worst of humanity. The law in the U.S. is clear and in place to punish those worst players, the ones who seek profit from buying and selling organs. It’s time to recognize that the law hasn’t done nearly as much as it can for those charitable live donors who are the best among us.” American Medical Association Editorial (2012) “The reality is. . .our federal resources would be better spent supporting programs to increase donation rather than to force changes to existing allocation policies. If

∗ Corresponding author at: Dept. of International Studies, Rhodes College, 2000 North Parkway, Memphis, TN 38112, USA. Tel.: +1 901 843 3573; fax: +1 901 843 3371. E-mail addresses: [email protected] (S.J. Ceccoli), [email protected] (R.A. Glean). 1 Tel.: +1 940 397 4568.

we are serious about making a difference, we have to be serious about increasing the number of organ donors. In most cases, finding the solution to a problem is the hardest part. But in this instance, we know what we need to do, we just don’t know the best way to do it.” Rep. Gene Green (D-TX) (U.S. House, 1999, p. 7) Organ procurement and allocation policies are critical issues for health policy analysts as well as social scientists interested in public policy and policy change. Organ procurement refers to the process of harvesting organs from both living and deceased donors for human transplantation, while organ allocation refers to the matching of donor organs and their recipients. Though the two systems are intricately linked, this paper focuses on the procurement system and public attitudes toward that system. Although opinion polls show that as many as 95% of Americans are aware of organ donation and approximately 85% support donation, “the supply of organs has not kept pace with the increasing number of transplant candidates, continuing to widen the gap between transplant demand and organ

0362-3319/$ – see front matter © 2013 Western Social Science Association. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.soscij.2013.07.015

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supply” (Franz, Drachman, DeJong, Beasley, & Gortmaker, 1995; GAO, 1997, p. 1). Given this gap, more than 6300 people died in the U.S. in 2012 while awaiting a transplant and over 118,000 needy Americans remain on the donor list as of May 2013 (OPTN, 2013). This imbalance is striking when considering that 69% of respondents in one study indicate that it was their desire to be an organ donor following their death (Franz et al., 1995). Supporting organ donation in the abstract and a willingness to become a donor are not necessarily indications of support for a particular policy position, however. In the vernacular of Eisner (2000), the current ‘regulatory regime’ for organ procurement is based on the principles of voluntarism and altruism. Current organ procurement policy is designed to protect public health by prohibiting the “transfer [of] any human organ for valuable consideration” for transplant purposes (42 U.S.C.A. 274). In short, the law prohibits the sale of human organs. In doing so, however, the current organ procurement system does not necessarily and actively promote public health. In light of these practical and social realities, organ procurement presents a vexing collective action problem. For healthy individuals not in need of a transplant, the availability of an organ for transplant is a desirable social outcome, but likely an issue with low salience and sense of immediacy. Nevertheless, for those in need, the ready availability of a donor organ has potentially life-saving implications and consequences. Therefore, it seems reasonable to ask, would the large majority of individuals who are supportive of organ donation also support the idea that U.S. government should consider legalizing and regulating the sale of human organs for transplants to enhance organ procurement and the availability of organs? This paper seeks to answer this question by analyzing results from a nationwide survey examining individual level attitudes toward organ procurement policy, specifically for the legalization and regulation of the sale of human organs for transplants. 1. Understanding attitudes toward organ procurement policy Understanding attitudes toward organ procurement policy is important issue to social scientists for several reasons. First, the scarcity of donor organs creates a significant public health problem. As of May 2013, the number of patients on the Organ Procurement and Transplantation Network (OPTN) waiting list (118,000) exceeds the population of mid-sized American cities such as Ann Arbor, Michigan and Athens, Georgia. Approximately half of the nearly 6300 people who died on the waiting were waiting for kidney transplants, while the Centers for Disease Control reports that kidney disease was the ninth leading killer of Americans in 2009. As The Economist (2006) observes, “if just 0.06% of healthy Americans aged between 19 and 65 parted with one kidney, the country would have no waiting list.” According to one estimate, a person is added to the recipient waiting list every ten minutes. On the other hand, an average of eighteen people will die each day in the U.S. while awaiting a transplant, according to the advocacy group, Donate Life. In simple terms, the current scarcity reflects a considerable gap between supply and demand of

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organs available for transplantation as thousands of potentially unnecessary deaths occur in the United States each year as a consequence of this imbalance. In considering such scarcities, differing empirical, ethical and regulatory considerations necessitate distinguishing between living and deceased (cadaveric) donors. When the federal government first began compiling such statistics in 1988, 69% of donors were deceased donors compared to 31% living (OPTN, 2013). As advances in medical technology, such as laparoscopic kidney surgery and developments in liver regeneration techniques, emerged to make living donation safer and donor awareness campaigns proliferated, the number and proportion of living donors rose. From 1999 to 2006, relative parity emerged in the proportion of living and deceased donors, and in the years 2001, 2002, and 2003, the number of living donors exceeded deceased donors. However, 2004 was the peak year for living donors (7004), and with the exception of 2009, the number of living donors has declined each year since then. As of the end of 2012, 58.1% of the 14,014 donors were deceased donors compared to 41.9% living. Ethical issues also differ substantially between live and deceased donation. As others argue, deceased donor transplants raise concerns about the potential for limiting or removing opportunities for altruism, whereas live donation raises concerns about the potential exploitation of donors (Caplan & Coelho, 1998; Goodwin, 2006; Wilkinson, 2011). Considerable regulatory distinctions between living and deceased donor procurement also remain. For instance, early regulatory frameworks and federal laws – such as the 1968 Uniform Anatomical Gift Act (UAGA) and its subsequent revisions in 1987 and 2006, and the 1984 National Organ Transplantation Act (NOTA) – apply exclusively to deceased donation and made no provisions for living donation. It was not until the 2004 Organ Donation and Recovery Improvement Act (ODRIA) that federal law became directly applicable to living donation. More recently, industry analysts claim that “government oversight of the living donation process is limited” (Williams & Reyes-Akinbileje Swendiman, 2009, p. 56). Second, the current organ procurement system in the United States – resulting from the UAGA and NOTA – is based on altruism and voluntarism (Kass, 1992; May, 1985). According to the then chairman of the AMA ethics committee, Dr. Frank Riddick Jr., “We have a nationwide crisis and altruism doesn’t seem to be hacking it right now” (Barnard, 2002, p. C1). Furthermore, as James Taylor (2009, p. 115) laments, “It is now widely recognized that attempts to rely on altruistic donation to solve the chronic shortage of human organs available for transplantation are failing, and are likely to continue to fail in the future.” The Economist (2006) is perhaps the most blunt in its assessment of a volunteer-based system, calling it “the worst of all policy options.” Consequently, alternative approaches to organ procurement based on incentivization are routinely proposed (Beard, Kaserman, & Osterkamp, 2013; Childress, 1989; Kaserman & Barnett, 2002). While markets play a fundamental role in mediating socio-cultural relationships and are central to the contemporary American health system, viewing the organ procurement system in market terms involving the use of financial or other incentives to

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increase the supply of available organs remains a highly controversial topic (Hansmann, 1989; Kaserman & Barnett, 2002; Schwindt & Vining, 1986) as ethical questions remain the single greatest argument against the use of incentivization for organ procurement (Childress, 1989, 1992; Cohen, 2003; Price, 2001). Although traditionally a concern for ethicists, Weimer (2010, p. 71) points out that “a number of ethicists have made arguments in favor of markets on a variety of grounds, ranging from respect for personal autonomy to utilitarianism.” In referring to such work, Weimer also notes, “the morality of organ markets cannot be assessed in the abstract, but must rather be determined in terms of the specifics of their regulation (2010, p. 71). Not surprisingly, a growing body of literature has emerged over the past two decades in support of using monetary and non-monetary incentives to increase the supply of transplantable organs emanating from physicians (Hippen, 2005; Matas & Schnitzler, 2004), bioethicists and academic philosophers (Caplan & Coelho, 1998; Cherry, 2005, 2009; Dworkin, 1994; Taylor, 2005), economists (Beard et al., 2013; Hansmann, 1989; Kaserman & Barnett, 2002; Kass, 1992; Schwindt & Vining, 1986, 1998; Tabarrok, 2002), political scientists (Rosen, Vining, & Weimer, 2011; Wilkinson, 2011), and sociologists (Fox & Swazey, 1992; Healy, 2006). Healy (2006, p. 3) asserts, “Long considered beyond the pale, the for-profit exchange of blood and organs is now a serious alternative to current policy.” Short of a “pure market system” which involves a direct transaction between the organ donor and prospective buyer and is unlikely to withstand ethical or regulatory scrutiny, proposed market-based or incentivized exchanges include the creation of spot markets or futures markets, tax incentives to donors and the development of a publically controlled monopsony. For living donations, incentivized exchanges such as paired organ donation in which two donors whose organs are incompatible with their intended recipients are paired to “trade donations” in order to better match needy recipients and list donation, which enables donors who are incompatible with their intended recipients to donate to a stranger on the waiting list in exchange for the advancement on the waiting list of the intended recipient, have been legalized over the past decade (Williams & ReyesAkinbileje Swendiman, 2009). In an effort to incentivize living organ donation, North Carolina Representative Larry Kissell introduced the 2011 Share Your Spare Act to provide a tax credit of up to $10,000 for those donating organs to cover donor expenses or lost wages. In addition to Kissell’s proposal and others like it, several states have instituted incentives for organ donors ranging from tax breaks to paid leave to cash transfers. In Pennsylvania, for example, organ donors may get $300 from the state toward their funeral expenses. The 1999 Organ Donor Leave Act increases the number of paid days off for federal workers who donate organs from seven to thirty. In effect, as opposed to providing a financial incentive to increase organ donation, this law reduces one of the disincentives associated with organ donation – time away from work. For deceased donor programs, Pence (2000) outlines several alternative approaches for incorporating monetary incentives into the process. For instance, the “rewarded cadaveric donation” approach is based on the use of monetary incentives to

entice and reward the family of the deceased or brain-dead relative to donate an organ. Third, given that the current altruist-based policy status quo was designed to protect public health by outlawing potentially nefarious transfers of human organs, but does not necessarily and actively promote public health, the inherent degree of state involvement in decision-making is also critical issue for social scientists. State involvement in medical governance can be viewed as a continuum ranging between individual decision-making, and societal decision-making. This conceptualization of state involvement is akin to what Polanyi (1957) refers to as the “double movement” combining the individual freedoms associated with economic liberalism and social protectionism inherent in state involvement. In this regard, Festle (2010, p. 50) asserts, “The federal government has been involved in organ transplantation to a degree that is unusual in American medicine.” Similarly, Weimer (2010) cites the importance of “private rulemaking” as a relatively unique form of regulation in the governance of organ transplantation. Fourth, as social scientists, we know surprisingly little about mass attitudes toward organ procurement policy. This is evident with few exceptions (Franz et al., 1995); there remains a dearth of empirically-driven, individuallevel social scientific studies of attitudes toward organ procurement policy. As Siminoff and colleagues lament, “Unfortunately, the development of public policy on organ procurement has relied more on theory than empiric data” (1995, p. 11). Likewise, as Healy (2006, p. 7) suggests, “We need a way to think about the relationship between those who give (or sell) human goods and those who receive (or buy) them.” 2. A brief history of organ procurement policy In examining policy change over time, Eisner (2000) defines a regulatory regime as “a historically specific configuration of policies and institutions which . . . play a central role in structuring regulatory policies and the relationship between societal interests, the state, and economic actors.” Eisner’s conceptualization of regulatory regimes suggests that institutions and societal interests often converge to produce enduring policy stability. Table 1 summarizes the evolution of organ procurement policy by dividing the history into three stages covering the final half of the twentieth century, each sharing a number of characteristics. First, formal institutions serve as cornerstone or landmark laws that create regulatory arrangements and define the structures and processes which guide the policy. Second, though less well known and often underappreciated, informal institutions are apparent as part of the fundamental philosophy underlying the policy. Third, occasionally, though not always, seminal events or technological breakthroughs may disrupt the long periods of slow, incremental policy change. In this manner, focusing events can create a catalyst for institutional change (Birkland, 1997; Kingdon, 1995). Collectively, these factors contribute to a unique regulatory regime created primarily by legislators working with other significant actors in the policy subsystem.

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Table 1 Distinctive regimes in organ procurement policy. –1968

1968–1984

1984–present

Landmark law

None

Public choice approach Fundamental philosophy

Anarchy Organ procurement not on policy agenda

1968 Uniform Anatomical Gift Act Altruism Uniform state laws

1984 National Organ Transplantation Act Altruism; Politics Prohibition of financial compensation; emphasis on voluntarism

Focusing event

First successful transplants performed

Cyclosporine and other related drugs developed

Public pressure from desperate families; concern over organ commodification

Present–?

Politics; Markets? Private/incentivized organ markets; debate over appropriate/limited government regulation Organ shortage

Source: Authors.

The origin of organ transplantation politics is practically synonymous with the growth of the science. The first organ transplant was performed in 1954 when surgeons removed a kidney from one identical twin and transplanted it in the other. Heart transplantation became a viable procedure during the 1960s. Since then, the somewhat crude procedures were significantly developed and refined to where more than 28,000 transplants were completed in 2012, a number that has remained steady over the past decade and more than double the number of transplants completed in 1988 (OPTN, 2013). Of the 28,000 plus transplant procedures, 79.1% involved organs from deceased donors (OPTN, 2013). Moreover, “almost all solid organ recipients now enjoy an 83 to 97 percent survival rate at 1 year” (U.S. House, 1999, p. 26). These transplants include almost all major organs from kidneys to livers to hearts to lungs to pancreases as well as a number of human tissues. The advent of the immunosuppressant drug, cyclosporine, made the transplant of organs other than the kidney feasible in the early 1980s. It was the development of cyclosporine and other immunosuppressant drugs that initiated the modern political discussion of this social dilemma. As the demand for organ transplants increased, the National Conference of Commissioners on Uniform State Laws (NCCUSL), an organization with commissioners appointed by each state to draft laws to ensure uniformity among the states, believed that guidelines were needed to ensure equity, safety and access to organs.2 As a result, NCCUSL officially placed the emphasis on the right of individuals to make their own decisions regarding organ donation with passage of the Uniform Anatomical Gift Act in 1968. That is, individuals and their families could either agree to donate an organ or simply refuse to do so. The 1968 UAGA as well as its subsequent revisions in 1987 and 2006 pertain only to deceased donor transplants. In addition, though UAGA did not deal directly with the issue of organ sales, this omission meant that the sale of organs was not expressly prohibited. As Goodwin (2006, p. 112) points out, “In fact, E.B. Stason, chair of the UAGA Drafting Committee, suggested that ‘the matter [of compensation] should be left to the decency of intelligent human beings.’

2 Blumstein (1989), Festle (2010) and Weimer (2010) provide thorough overviews of the early governmental role in organ transplantation.

Stason’s characterization is consistent with the notion that the 1968 UAGA may have had more immediate relevance for those performing medical research than those interested in pursuing transplantation.” By 1973, all 50 States and the District of Columbia passed their own versions of this law. In doing so, the states affirmed the emphasis on authorized donations by individuals and their families as well as the dual emphases on voluntarism and altruism. Originally, not much discussion took place over regulating organ procurement as it was generally assumed that the medical community would have complete oversight on the issue. However, as the medical process of organ transplants expanded with new technology, more patients became candidates for this benefit. Consequently, during the early 1980s, a number of needy families made public appeals in seeking donors and financial assistance for transplants. The issue gained attention during the early 1980s when President Reagan mentioned organ donation during his weekly radio address. While Reagan’s mentioning of organ donation helped advance the issue on the government’s agenda, it was developments like the following that created a catalyst for sweeping federal legislation. In 1983, H. Barry Jacobs, a Virginia physician who had earlier lost his license to practice medicine, developed a private market arrangement to buy and sell human organs. Jacobs proposed to broker kidneys from live donors to needy patients and created International Kidney Exchange Ltd. to oversee the transaction. In the arrangement, kidney donors could name their price for the organ, and Jacobs would collect a “finder’s fee” of $2000–$5000 for arranging the transaction. Jacobs also planned to broker kidneys from Third World indigents to recipients in the United States and other developed countries. Later, in 1984, Jacobs outlined his proposal in hearings before the House Subcommittee on Health and the Environment. Medical interest groups such as the National Kidney Foundation, the American Society of Transplant Physicians, and the Association of Independent Organ Procurement Agencies rejected Jacobs’ proposal. Thus, with the increase in frequency of transplant procedures, the medical community’s failure to provide sufficient oversight, and controversial proposals, such as the one developed by Jacobs, the need for clear and common standards became evident. Congress responded to these growing concerns by enacting the National Organ Transplantation Act (NOTA) in 1984, which classified human organs as a national resource and specifically

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prohibited the transfer of human organs in exchange for compensation. Specifically, the law states that “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” [Section 301 of NOTA (42 U.S.C. § 274e)]. In making this prohibition of the sale of organs a federal law, Congress invoked harsh punishments for those found in violation, including up to five years in prison and as much as a $50,000 fine if convicted of buying or selling human organs. Moreover, in the United States, today, it is legal to sell blood, bone marrow, and sperm, though illegal to sell organs. Recognizing the politics associated with NOTA’s enactment, Goodwin (2006, p. 113) observes, “Organ commodification became a growing concern, which ultimately prompted a less reasoned congressional response, intended more to ease immediate tensions rather than establishing a long-term vision for organ procurement. Fears associated with slavery, child abductions, and body snatching for organ removal heightened tensions across the nation.” Through NOTA, the Department of Health and Human Services awarded a contract for the development and implementation of a national organ network to the United Network for Organ Sharing (UNOS) that went into effect October 1, 1987. UNOS was given the responsibility for maintaining a national registry of patients needing transplants and the network has been fully operational since that time. Establishing such a uniform registry required the creation of the Organ Procurement and Transplantation Network (OPTN). UNOS, the Richmond, Virginia based nonprofit organization comprised of medical professionals, transplant recipients and donor families, now serves as the umbrella organization for organ transplants in the United States. UNOS maintains the nation’s organ transplant waiting list, works to assist in the development a national transplantation policy, and operates an aroundthe-clock organ placement center to ensure efficient and optimal matching of donors and recipients.3 Following NOTA, the 1986 Budget Reconciliation Act included a mechanism designed to increase organ donation by instituting organ donor requirements for hospitals that provide care for Medicare and/or Medicaid patients. The law called on such hospitals to develop clear protocols for organ procurements and actively encourage donor participation. Shortly later, in 1987, the NCCUSL revised the 1968 UAGA to clarify the legal authority of the deceased’s donation wishes. The NCCUSL used this opportunity to reinforce the voluntary nature of procurement and reaffirmed the prohibition on providing compensation to donors. However, since the NCCUSL operates at the state level and not the federal level, a lack of uniformity in state procedures as well as a disjuncture with federal law has been evident. For

3 The national system is subdivided into hundreds of Organ Procurement Organizations (OPOs), nonprofit corporations affiliated with various medical centers that coordinate activities relating to organ procurement in a designated service area. OPO’s also evaluate potential donors, provide information about donation to family members, arrange for the surgical removal of donated organs, and make arrangements for distribution according to national organ sharing policies.

instance, as the Uniform Law Commission (2013) acknowledges, “only 26 states enacted the 1987 UAGA, resulting in non-uniformity between those states and the states that retained the 1968 version. Subsequent changes in each state over the years have resulted in even less uniformity. In addition, neither the 1968 nor the 1987 UAGA recognizes the system of organ procurement that has developed partly under federal law.” Since then, Congress has made only incremental and relatively minor legislative changes. For instance, the 2000 Organ Procurement and Transplantation Network Amendments Act establishes medical criteria for allocating organs and for listing and de-listing patients, placed emphasis on minimizing the wasting of organs and futile transplants, and directed the HHS Secretary to establish a Scientific Advisory Committee on Organ Transplantation. The 2001 and 2003 Organ Donation Improvement Acts focused on the creation of new incentives for people to become organ donors at the individual, transplant center, and state levels. Until this point, there were no federal laws directly applicable to living donors (Williams & Reyes-Akinbileje Swendiman, 2009). This changed with the passage of the 2004 Organ Donation and Recovery Improvement Act (ODRIA), which provides grants to states to promote organ donation awareness programs, provides grants to reimburse living donors for their travel subsistence expenses, and directs the Secretary of Health and Human Services (HHS) to both increase living organ donation and evaluate the long-term effects associated with living organ donations. Later, in 2007, the Charlie W. Norwood Living Organ Donation Act took a further incentivizing step by ensuring that paired organ donation does not violate NOTA’s “valuable consideration” provision. This law removed legal uncertainties that prevented some hospitals from participating in paired donations. In passing the House of Representatives with a vote of 422-0, the Norwood law illustrates a rare consensus among House lawmakers; Charlie Norwood was a Republican Representative from Georgia with chronic lung disease, who received a transplant in 2004 before dying of cancer in early 2007. In addition, the Norwood law also requires the HHS Secretary to report annually to Congress on the longterm health effects of living organ donation (Williams & Reyes-Akinbileje Swendiman, 2009). 3. A model for explaining individual attitudes toward organ procurement Conceptualizing the organ procurement system as a public health issue and a transaction cost problem is useful because it directs analytical attention to both structural and individual considerations. For instance, in considering how societies should allocate scarce goods, Murray Horn’s (1995) “structure hypothesis” argues that enacting coalitions seek to make the design of legislation and the resulting institutional frameworks as durable as possible so they will endure long after the dissolution of the enacting coalition. This approach also suggests that exogenous factors can “determine the relative importance of the different types of transaction problems and the availability of different types of institutional instruments” (Horn,

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1995, p. 30). Other transaction costs – financial or nonfinancial – may be structural in nature and extend beyond the realm of the individual. For instance, Healy emphasizes “the cultural contexts and organizational mechanisms that provide people with reasons and opportunities to give” (2006, p. 2). Given that the current system is based on voluntarism, the shortage of organs for transplant may emerge largely because health care professionals simply fail to ask families to donate (Siminoff, Arnold, Caplan, Virnig, & Seltzer, 1995). Others contend that the problem lies in the denial of consent by the donor’s next of kin (Sade, 1999; Wendler & Dickert, 2001). Still others lament the controversy over what constitutes death – that is, the ‘certainty’ of death (Lock, 2002; Ott, 1995; Youngner, Arnold, & Schapiro, 1999). The costly nature of organ donation is evidenced by the fact that just 40% of suitable individuals donate their organs following death (Conrad, Brigham, Eakin, Sheehy, & Hunsicker, 2000). Finally, the nationwide scarcity of donor organs may be a function of an ineffective or inefficient procurement system (Healy, 2006). In addition to the societal costs and structural factors described above, increasing the supply of donor organs also requires overcoming a number of individual transaction costs. Since becoming directly involved in the process by donating an organ imposes a certain set of costs on the individual, many individuals may be reluctant to become donors themselves and/or choose not to donate the organs of their next of kin at the time of their death. Here, too, it is instructive to distinguish between living and deceased donor transplants. Through the combination of UAGA and federal legislation, transaction costs associated with deceased donors have decreased as almost every state now gives its residents an opportunity to register as a donor when applying for a driver’s license. Upon death, the Organ Procurement Organizations seek out the next of kin of potential donors to seek donations. Increasingly, states are requiring OPOs to harvest organs from people who have previously signed up to be donors even when next of kin object. Conversely, the transaction costs for live donation – often measured in terms of financial costs, informational costs, and health risks, among others – remain high (Beard et al., 2013). Thus, in addition to societal or structural considerations, individual-level factors are equally critical when considering different approaches to organ procurement. In the context of human organs as a scarce national resource, the public choice approach acknowledges at least four alternative ways in which public goods can be allocated: anarchy, altruism, markets and politics (McLean, 1987). These four approaches provide the basis of a framework for explaining individual-level considerations. 3.1. Anarchy An anarchic perspective in the case of organ procurement suggests the absence of any state role. This framework is most appropriate for characterizing the period, for example, prior to the 1950s, when there was simply no medical alternative for patients suffering from organ failure. However, as advances in modern medicine have created alternatives to extend life, this position for

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governing the organ procurement system remains closest to the libertarian position in which individuals would likely prefer a procurement system based purely on individual discretion and the absence of state controls. Such a system, however, currently remains politically infeasible. 3.2. Altruism In The Gift Relationship, British social researcher Richard Titumss (1970) provides the classic arguments for altruism in blood donation. Titmuss concludes that altruism, and not markets, provides a better system for maintaining the blood supply, higher quality blood donations, and more social cohesion. Taking a careful and highly nuanced look at Titmuss’ arguments from a sociological perspective, Healy acknowledges “‘Donation’ suggests a system where gifts are unconditionally given and gratefully received. But research on markets and actual systems of gift exchange shows a more complex reality than the stylized versions often found in public debates about commodification and altruism” (Healy, 2006, p. 21). While voluntarism and altruism have provided the intellectual basis for the organ procurement policy regime in the United States for the past several decades, Healy (2006, p. 3) concedes that “the sale of human body parts is a standard trope in broader debates about commodification.” The following two approaches – markets and politics – provide a specific context for shaping individual-level sentiment and provide the basis for shaping individual-level hypotheses. 3.3. Markets Given the discussion of incentivized considerations above and using the logic of markets, we argue that whether and to what extent persons are supportive of regulating the sale of human organs for transplants are conditioned by several market-specific factors, including one’s level of income, employment status, and educational attainment. The general consideration is that those who are better positioned to succeed in incentive-based interactions are more likely to be supportive of replacing the current approach embedded in altruism and voluntarism with one based on an incentivized mechanism. Those able to compete more successfully in the marketplace are better able to take advantage of incentivized opportunities that arise and better able to withstand and/or rebound from market downturns. Moreover, we posit that those with higher incomes are more supportive of the legalization of the sale of human organs for transplant as the wealthier are naturally in a stronger position to participate in an incentivized organ procurement system.4 Data limitations, however prevent us from using income as an explanatory variable in our model. Therefore, applying the same explanatory rationale for the inclusion of income, we argue that one’s employment status is also positively related to support for the use of monetary or

4 Rather than a pay for access model, we presume human organs would be distributed like any other expensive medical good. We thank an anonymous reviewer for a clarification on this point.

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non-monetary incentives in organ procurement. That is, the employed are in a much better position to thrive in the marketplace than those who are unemployed. Thus, we expect to see a positive relationship between employment status and support for market forces in organ procurement. Like income and employment status, education is a form of human capital that provides inherent advantages in incentivized situations. As is the case with wealth, educational attainment, when conceptualized as a material consideration, should translate into advantages in an incentivized situation, as those with higher educational attainment have greater access to information and should be more nimble in navigating the vagaries of the market. Therefore, we posit that those with higher levels of educational attainment are more likely to be supportive of regulating the sale of human organs for transplants.

3.4. Politics Fourth, as demonstrated by Festle’s (2010) characterization of the “politicization” of the history of organ procurement policy, politics can be an important tool in the design of an effective organ procurement system. Given the infeasibility of anarchy, the current experience with altruism and the inherent ethical concerns over the use of markets, political institutions in the form of both legal rules and norms play a critical role in procuring of human organs. Federal or state intervention reflects the government’s mandate to promote and protect public health. In considering politics, aside from the factors that directly pertain to material self-interest, we argue that one’s political predisposition influences sentiment toward regulating the sale of human organs for transplants. We posit that those on the Left of the political spectrum are more supportive of legalization and regulation because of its potential to curtail the perceived societal inequalities inherent in the current system. Unafraid to challenge the policy status quo, political liberals and progressives traditionally seek to remedy structural impediments against the disadvantaged in the health market place, promote widespread access to health, and alleviate societal inequalities between the advantaged and disadvantaged. Conversely, we argue that political conservatives are less likely to support the legalization and sale of organs in order to preserve the policy status quo based on altruism and voluntarism. Although those on the political Right are generally supportive of the use of markets in the provision of health, and typically look more favorably than political liberals on the significance of using markets to play more a determinative role in generating health outcomes – as has been the case with other cost-shifting mechanisms used in recent health policy areas, such as Health Savings Accounts and Medicare Part D benefits for seniors – conservatives are also more likely to be concerned about the increased potential for regulation that such a move naturally invites, as markets for organs would be tightly regulated. As Weimer (2010) points out, private rulemaking is a cornerstone of the status quo policy and conservatives do not desire the

increase in formal regulatory activity brought about by a major policy change. 4. Data, method and results To test these propositions, we use survey data from a CBS News/Vanity Fair Monthly Poll completed in May 2010. The survey utilizes a national probability sample using a variation of random-digit dialing (RDD) with primary sampling units (PSUs) consisting of blocks of telephone numbers, both land-lines and cell phones, and is stratified by geographic region, area code, and size of place.5 The survey also has a large sample size (n = 855). The question used for the dependent variable in this empirical analysis is straightforward. Respondents were asked, “Should the U.S. government consider legalizing and regulating the sale of human organs for transplants, or not?” More than a quarter of 855 respondents (28.5%) answered “yes” while 63.6% answered “no.” Fewer than 10% (7.8%) indicated an answer of “don’t know/no answer.”6 Before proceeding, we recognize some important limitations of this particular dependent variable question wording, a point to which we return below. First, it does not explicitly distinguish between the commodification of live and deceased donor organs, a distinction which, as discussed above, raises separate practical, ethical, and regulatory considerations. Second, the relatively open-ended question wording does not frame for the respondent a specific aspect of legalization or regulation that may help respondents better conceptualize the issue in formulating a response to the question. On the other hand, the current question wording is advantageous for our research design since it focuses less on one’s willingness to become a donor or offer a general appraisal of organ donation in the abstract as featured in other mass attitude surveys, such as the General Social Survey and the Gallup Poll. Instead, the survey offers the opportunity to focus on a policy-specific consideration as the dependent variable with classic social science variables as potential explanatory factors. Second, conducted in early 2010, the survey should produce a fair and timely assessment of sentiment toward the regulation and legalization of human organ sales. Third, the distribution of responses are consistent with Healy’s observation that “Support for organ donation, and people’s comfort with the idea of organ harvesting, is fragile. The public does not think about these matters in the same way as the medical profession and the human-goods industry” (2006, p. 112). Thus, the current question offers a broad indication of the current climate of opinion on a topic in need of further systematic inquiry.7 A logit model is estimated to determine how well the hypotheses explain the variation in individual attitudes toward the legalization and regulation of the sale of human

5

CBS News and Vanity Fair (2011) for more survey details. The 67 survey respondents who answered “don’t know” or declined to answer the question were excluded from our analysis. Listwise deletion is used for other missing observations in the data. 7 The phrase “climate of opinion” is a term used by historians to refer to “the fundamental assumptions and attitudes shared by significant elements of a population at a given time” (Skotheim, 1969, p.1). 6

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Table 2 Logit model estimates. Explanatory variables Market explanation

Employed Education Ideology

Political explanation

Male

Control variables

White Age AgeSqr South NorthCentral Log likelihood LR chi2(9) N

P > |z|

Marginal effect

−.093 −.083 −.344***

.641 .257 .002

−.020 −.018 −.073

.398**

.019

.084

.893 .051 .054 .100 .075

.007 −.010 .010 −.068 −.081

Coef.

.033 −.049* .047* −.321 −.383* −424.1 25.44 705

Source: CBS (2010). Dependent Variable = Should the U.S. government consider legalizing and regulating the sale of human organs for transplants, or not? Responses are coded as (1) yes and (0) no. Those answering “don’t know” or not answering the question are coded as missing. Note: Figures are unstandardized coefficients shown alongside z-test probability values (Long & Freese, 2006). *p < .1; **p < .05; ***P < .01. The marginal effect refers to the change in predicted probability for the independent variable of interest as it shifts from its lowest to highest value when holding all other explanatory variables at their means.

organs for transplants. In addition to the explanatory variables described above, we control for several variables about which we have no a priori expectations but are routinely associated with health-related decisions – gender, race, and age. Following standard convention when using age as an explanatory variable, we also include an age squared variable to test the linearity of the influence of age. Finally, based on Healy’s (2006, p. 68) observation that “procurement rates also display strong regional patterns, with the upper Midwest in particular supplying far more donors than average, with most of the West and South doing poorly by comparison,” we also include the dummy variables South and North Central – as designated by the U.S. Census Bureau – to control for potential regional effects. Together, we argue that these explanatory variables – based on their material and ideological logics, respectively – in conjunction with the control variables included in the model provide important insight into better understanding mass sentiment toward organ procurement policy. The operationalization of each variable is described in Appendix A. Table 2 displays the model results. Since logit regression coefficients are not easily interpreted, Table 2 follows standard protocol (Long & Freese, 2006) and reports both unstandardized coefficients and the marginal change associated with the explanatory variables. First, we find no empirical support for Employed and Education. The coefficients for the market-centered variables Education and Employed are not statistically different from zero, thus we are unable to empirically link these variables to support for the legalization and regulation of the sale of human organs for transplants. Second, we find strong empirical support for the political explanation based on Ideology as the coefficient on the Ideology variable produces a negative and statistically significant result. As hypothesized, we find that those who self-identify as politically conservative are less likely than moderates or political liberals to support the legalization and regulation of the sale of human organs. In marginal terms, model

results indicate that political conservatives are 7.3% less likely than political liberals to indicate support.8 Our control variables also produce a number of interesting results. First, the dummy variable for gender, Male, produces a positive and significant coefficient, indicating that males are more likely to be supportive of the legalization/regulation than females. Conversely, we find no empirical relationship for the, White race variable. Third, the results of our two age-related variables, Age and AgeSqr, indicate that age is both an empirically significant and nonlinear predictor. The negative coefficient on Age (−.049) indicates that age has a decreasing influence on support for legalization/regulation. However, the positive and significant coefficient on AgeSqr indicates the effect of a one-year increase in age does not remain the same as a person gets older,9 and we find that age decreases support up to the age of 52.3 years and thereafter increases support. This result is intuitive given that 65% of all individuals currently on the transplant waiting list are age fifty and older (OPTN, 2013). The proportion of individuals in this age bracket seeking liver (78.5%) and lung (71.1%) transplants are even higher. Finally, our regional dummy variable for NorthCentral produces a negative and significant result, indicating that those who reside in the North Central part of the country are less likely to support the legalization and regulation of the sale of human organs than those in other regions of the country. The influence of being Male (8.4%) and residing in the North Central (−8.1%) have the greatest marginal effects of the control variables.

8 The marginal effect refers to the change in predicted probability of a positive answer as the independent variable of interest shifts from its lowest to highest value when holding all other explanatory variables at their means. 9 We thank an anonymous reviewer for a helpful suggestion in this regard. Following standard convention, we use the formula x = −b/2a to calculate the change in direction of the quadratic function (ax2 + bx + c). Based on our model results, we calculate the turning point in age as −(−.0493122)/(2*.000471) = 52.34 years.

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Table 3 Predicted probabilities.

Liberal Moderate Conservative

Female/Male

North Central

Non-North Central

.35/.45 .28/.37 .22/.29

.33 .26 .20

.42 .34 .27

Source: CBS (2010). Dependent variable = Should the U.S. government consider legalizing and regulating the sale of human organs for transplants, or not? Responses are coded as (1) yes and (0) no. Those answering “don’t know” or not answering the question are coded as missing.

Since logit coefficients are difficult to interpret, we use predicted probabilities to better interpret the relationship between variables (Long & Freese, 2006). The predicted probability that respondents will indicate support for legalizing and regulating the sale of organs for transplant are calculated. For the entire sample, the predicted probability for a given respondent of answering yes is .30, with a minimum probability in the respondent sample range of .15 and a maximum probability of .57. Given the statistically significant influence of several variables included in the model such as Ideology, Male, and NorthCentral, we calculate the predicted probability of a respondent answering yes, based on the differing values of these explanatory variables. For instance, using the predicted probability of.30 as a baseline, the following probabilities of answering “yes” are computed for political conservatives (.25), moderates (.32), and liberals (.40). The predicted probability for male respondents (.35) is considerably higher than for female respondents (.27). Similarly, those respondents residing in NorthCentral states have a .25 probability of answering “yes” compared to a .32 probability for those who don’t. Table 3 illustrates the predicted probabilities for the three statistically significant categorical variables in the analysis. The Table illustrates the considerable differences in probability, for example, between males who identify themselves as liberal (.45) relative to females identifying themselves as conservative (.22). Likewise, there are substantial differences in the predicted probabilities between those who identify themselves as liberal and reside outside of the North Central United States relative to those identifying as conservative and residing in the North Central. 5. Discussion and conclusion Though the numbers of organ donors and transplantations have increased since the passage of the 1984 National Organ Transplantation Act, a considerable national shortage of transplantable organs remains. The legislative status quo makes it illegal to engage in exchange of human organs for “valuable consideration,” and violators are subject to fines and imprisonment. Regulators have been concerned for several decades that buying and selling organs might lead to the exploitation of donors, inequitable access to donor organs and/or the trade in human organs for nefarious purposes. With over 118,000 Americans in need of organs and with mechanisms for procurement frustrating at best, there are increasing calls for monetary incentives

for donors and even a re-visiting of the legal framework to facilitate an increase in supply. Lawmakers concede, however, that despite the shortage, Congress is unlikely to approve any sale or purchase of organs on an open market. Rather, lawmakers will likely entertain incentives to increase the list of potential donors, including tax credits and other incentivized mechanisms already adopted at the state level and/or proposed elsewhere. A better understanding of public opinion is an important prerequisite for any move toward the use of incentivedriven donations. We present this analysis to shed further insight into individual-level factors that influence sentiment for legalizing and regulating the sale of organs for transplant. We use logit analysis of a nation-wide survey to test a variety of individual-level factors, including a materialist explanation, a political explanation, and a number of control variables. While we find no empirical support for the two material factors included in our model, employment status and education, we find strong support for political ideology as a basis for influencing sentiment toward organ procurement policy. Specifically, we find that those who identify themselves as politically conservative are less likely to support a policy geared toward legalizing and regulating the sale of human organs for transplant. We also find significant gender, age and regional differences, indicating that important demographic divides differentiate attitudes toward organ procurement policy. We offer this analysis as complement to extant scholarship in economics on incentivized organ procurement approaches, in sociology about the social context for organ procurement, in psychology about the cognitive effects associated with altruism, and in philosophy over the ethical considerations governing organ procurement and allocation. Indeed, we see this analysis a preliminary step at both theorizing about the significance of individual-level factors associated with sentiment toward incentivizing organ procurement as well as an empirical effort to better understand such attitudes. Given the relative dearth of empirical research on attitudes toward organ procurement, there is much remaining work to be done by social scientists on a relevant research program currently not being systematically pursued. An initial important step in this direction is for social scientists to continue asking meaningful survey questions to measure public support for organ commodification, while at the same time posing questions that would also provide for more nuanced explanations. The limitations of the dependent variable used in this analysis are instructive in this regard. First, survey questions need to distinguish between support for living and deceased organ donation. Similarly, questions differentiating between the commodification of solid organs and tissues, different types of specific organs (e.g., kidney, lung, heart), renewable and non-renewable cells, and high/low risk procedures will also be instructive. Second, although its policy orientation is welcome, the conflation of legalization and regulation in the current question needs to be disentangled and precisely specified as each term may signal different cues to respondents leading to varying interpretations. Such improved question framing will enable social scientists to compare attitudes toward organ donation in the abstract and

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regarding one’s willingness to be a donor – the type now commonly investigated – with attitudes toward policies with implications of varying degrees. Third, incorporating specific types of incentivized donation mechanisms, such as spot and futures markets, rewarded cadaveric donation, paired and list donations, proposals for new mechanisms such as the possible creation of a public monopsony, as well as potential reforms short of donor compensation would provide a clearer sense of respondent sentiment toward specific policy proposals (Beard et al., 2013). While asking questions that serve as potential dependent variables is imperative, the importance of asking effective questions for explanatory purposes is equally critical. First, as is a starting point for much of the public opinion literature, ascertaining respondents’ general orientations – such as views on the roles of governments and markets, monetary and non-monetary incentives, party identification, social class orientation, and views on healthy behaviors – are important precursors for explaining and better understanding the policy attitudes and preferences of respondents (Kinder, 1983). Second, since organ transplantation is presumably a low salience issue for most Americans, it is valuable to discern survey respondents’ levels of knowledge, awareness, and salience regarding organ transplantation to provide both survey responses as well as a gauge of the impact of public awareness campaigns. Such information is compelling since the science deficit model argues that knowledge leads to belief change (Irwin & Wynne, 1996). Third, explanations will benefit from further attitudinal data from respondents regarding similar health related issues involving commodification and moral debates as well as on other health related issues involving preventive care (Zelizer, 1979). In each case, markets and the use of incentivization play important roles in mediating fundamental socio-cultural relationships. Despite the current imbalance between donor supply and demand, current conditions in the broader political environment are simply not conducive for generating a significant change in the public policy of organ procurement in the U.S. This occurs for at least two reasons. First, even though organ procurement and organ allocation are distinct issues, they are often framed as a single issue – organ donation. With this type of issue framing, legislators are limited in shaping organ procurement policy because of the strong belief by both the medical community and Washington lawmakers that such policy should be made by the medical community. The following quotations tend to summarize this policy-making dilemma: The federal government should not be in the position of proposing transplant policy. The transplant community feels very strongly that we—the surgeons, donors, donor families, patients, and OPOs—must continue to develop transplant policy in a consensus-driven process that is able to respond to the latest advances in medical technology, while simultaneously ensuring the maximum level of access to transplantation for all patients. Dr. Robert Higgins, Transplant Surgeon (U.S. House, 1999, p. 72)

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The Federal government should ensure that proper minimal performance standards are set, and met, and that organizations which do not meet these standards are removed. However, when it comes to policies regarding distribution of organs, the Federal Government should allow the scientific and medical community, with proper non-political oversight, to enact and enforce rules designed to maximize organ usage and patient survival. This process is a fast moving, fluid one, as is transplantation itself, and is not the appropriate place for regulation by the law-making process, which is slow and subject to political influence. John Campbell, Lifelink Foundation (U.S. House, 1999, p. 67) The second reason contributing to the likelihood of perpetuating the policy status quo is that the key actors in the policy subsystem have not effectively mobilized. In this sense, an effective advocacy coalition in favor of revising the current policy has yet to emerge. Given the nature of the current organ procurement institutional arrangement and in the absence of a potential focusing event, a number of the leading medical interest groups in the policy subsystem continue to oppose payment for organs. Opposition comes from the National Kidney Foundation, the American Society of Transplant Surgeons (ASTS), and the Association of Organ Procurement Organizations (AOPO). These groups argue that compensation of any kind for organs is wrong. Finally, the regulatory status quo yields several important distributional consequences. In addition to protecting the public from nefarious behaviors involving the exchange of human organs, there remains a clear realization that public health is also at risk when needy patients do not have access to healthy human organs for transplant. Therefore, expediency has emerged as an important criterion as legislators and regulators have become more aware of the perils associated with the scarcity of available organs, something needy recipients have long known. Acknowledgement The authors thank Kim Stevenson for her research assistance. Appendix A. Description of dependent and independent variables A.1. Dependent variable Support for Legalizing and Regulating the Sale of Human Organs for Transplants. Respondents were asked: Should the U.S. government consider legalizing and regulating the sale of human organs for transplants, or not? Responses are coded as (1) yes and (0) no. Those answering “don’t know” or not answering the question are coded as missing. A.2. Independent variables Employed – Dummy variable where 1 indicates respondent self-identification as Employed and 0 indicates all other respondents.

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