Vigilance Against Exploitation
Mitigating the Threat of Commercialism
Susceptibility to “the international market of organ trading” was a predominant concern; which participants attributed to poverty, corruption, and the extreme wealth differential within and across countries. Commercial transplantation was perceived as inevitable and inescapable, which “tainted” altruism and “harmed” transplantation. Some participants described having “burnt their fingers allowing nonrelated donors as people masqueraded as friends who turned out to be paid donors” or held suspicions that “people were getting married to get a kidney.” Participants explained that strict regulations that permitted only related/spousal donors with adequate proof of a genuine relationship with the recipient were thus imposed to prevent organ trafficking and profiteering.
Some participants felt troubled by the sex and social class disparities they observed in potential living donors. The number of women donors appeared disproportionate, and some believed this was perpetuated in a patriarchal society—by religious beliefs—“the humble Hindu wife, husband is god,” or cultural devaluation of their social role because they were not the family breadwinner. Some participants were compelled to address such imbalances by providing more counselling, rigorous psychological screening, and education.
Participant reiterated the importance of ensuring voluntary consent to donate. They remained alert to possible coercion, undue pressure from family members, and potential financial exchange; and believed in providing an “honourable way out” (for example, by giving a medical reason) for donors to avoid jeopardizing their relationship with the recipient and family. In Asian societies, “the family unit is important” which meant the expectation to help by donating may contribute to pressure on individuals to donate. They felt the process of donation had to be initiated by the donor, who should have “opportunity to opt out” at any time. ABO-incompatible transplantation removed the “natural barrier” to donate and in some cases caused decisional conflict in potential donors and required some participants to clarify the meaning and consequence of the decision to donate.
Maintaining Clarity of Professional Roles
Relying on Legal Safeguards
The widespread exposure to commercial transplantation made the need for action and policy to reverse this trend urgent. Participants also believed in the need for regulation to protect their own professional decisions and practice. Having a governing authority, ethical reviews, and strict regulation in place reduced the burden on clinicians in making subjective judgments about the legitimacy of donor-recipient relationships. One participant believed the absence of “controversy was because the transplant ordinance is really tight with little room to manoeuvre.” Living kidney donation was only permitted for related donors or could be authorized based on documented proof in spousal donation. In Taiwan, donor eligibility was limited to 5th degree consanguinity and spouses. This was perceived as justified where 1 participant stated “money can override friendship. But family is much higher than money and friendship.” Any forms of reimbursement between donor and recipients had to be documented in detail.
Ensuring Informed Consent
The donor's safety and well-being was of utmost priority, and participants believed they had a responsibility to inform and educate donors about potential risks, and to facilitate realistic expectations—“I routinely tell them you will be worse than the recipient because you are a well patient.I cannot make you better. I can only make you worse.” At the same time they reassured donors by emphasizing the stringent selection criteria and mechanisms in place to protect donors. A major difficulty was the lack of evidence on donor outcomes in the local population therefore they could not “adequately counsel a patient.” Providing “balanced” information was “dilemma” as encouraging postdonation follow-up for health monitoring raised doubts in the minds of potential donors about the harms. Particularly in the pediatric setting, counselling parental donors about the risk of recurrent disease, and the adverse implications on graft survival in children were deemed challenging.
A response to managing ethical complexities of potential commercialism and coercion was to define and separate professional roles. One surgeon expressed, “I'm more a technician. Whether there’s semi-financial coercion or emotional coercion, I leave it to the ethics committee to rule on that. I do not ask.” Determining financial exchange or the authenticity of relationship would complicate their role. Such responsibility was deferred to the governing ethics committee and they trusted in regulation restricting donations to related or emotionally-related (with proof of relationship)—“we have more work to do if the regulation was lifted, we are happy under this kind of regulation, we are more comfortable.” Some felt they had to refrain from “being involved in the life of the patient too much” so did not encourage donation directly with individual family members and were not in a position to interfere with the donor-recipient’s social problems.
Minimizing Conflict of Interest
Resource limitations prohibited a separate team for donor assessment however the involvement of a multidisciplinary team with a psychologist, social worker and ethical review minimized conflict of interest.
Meeting Community Expectations
The higher degree of conservatism in accepting “medically borderline” donors was noted by participants and was explained by the need to preserve and community trust in transplantation by maintaining transparency and ensuring good outcomes—“there is a general lack of trust in this society in our kind of environment. So that transplantation is unblemished and pristine and above board transparent, perhaps we are conservative because of that.” Otherwise, they would risk destroying the reputation of transplantation. Also, some countries were described as being “a closely related society in terms of genetics and culture, so they expect the outcomes to be very good.” For some, they had to protect the “10 year survival of 80%” transplantation program standard (in Taiwan)”. In considering paired-kidney exchange, some believed religious and socioeconomic differences may introduce cultural sensitivities which would need to be addressed to avoid negative publicity.
Some participants held anxieties about the risks of harms to potential donors and advocated for increased deceased donation to minimize the reliance on living donors. They could not “promise that when we take a kidney we really will not hurt their health.” A number were alarmed about the findings they heard presented at recent conferences which suggested “that the mortality of living donors is eight times higher than the general public.” Some were opposed to accepting younger donors whom they felt had a greater cumulative risk of chronic kidney disease or would place them at greater socioeconomic disadvantage if they were less able to earn a living as a result of donation. It was argued that living donor transplantation “de-emphasized the importance of the human body” and some questioned the ethical uncertainty of “prolonging somebody's life at the expense of somebody else.”
Societal Plight Driving Caution
Poverty and Desperation
Participants were faced with people offering to donate their kidney for money and were wary of being cautious to prevent commercial transplantation. They tried to convince people not to resort to selling their kidney.
Higher Risk of Disease
Some felt acutely aware of the extremely high incidence and prevalence of chronic kidney disease and risk factors, such as diabetes, in their country and were therefore more reluctant to accept donors, especially younger donors. This was speculated to be a reason for narrower criteria for donor acceptance, for example, “ I don't know the reason why they make the limitation of about 55 years (to be a donor), perhaps because we know the incidence of end-stage kidney disease is top 1 or top 2 in the world.”
Lack of Social Security
Concerns that donors lacked a safety net in terms of inadequate social security and having no waitlisting priority were expressed by some participants. If donors fell ill, it would be “catastrophic for them…and if they don't have anyone to support them, they will be lost.”
Navigating Sociocultural Barriers
Centrality of Family
Participants reiterated that family was central to decision-making. “Autonomy became the most important aspect of the American or Anglo-Saxon world, but in our part of the world, you can't be autonomous because you’re into a family, very closely knitted. It’s the family which is important, central to decisions.” Families were described as “cohesive,” and “bonded”; and the “sense of duty to one’s child or parents overrides.” They observed that certain family members (for example, husbands, parents, or in-laws) held authority over all aspects of family matters and from whom potential donors had to seek approval to donate. For example, “if the [potential donor] is married, even if they want to donate to brother and sisters, they have to ask their husband or wife to get their consent.” Or, “if it’s a husband then usually his parents will not agree with the son donating a kidney to the wife, usually people think the son has to earn money, that he has the most important role in the family.” Some noticed that families were concerned about fertility risks and would “try to protect the unmarried or married who will have children one day.”
Financial concerns and insecurity was driven by low wages and poverty in lower-middle income countries (e.g., Vietnam, India), or by competitive environments and high living expenses in high-income countries (e.g. Singapore, Hong Kong). Economic consideration was regarded as a matter of survival and an overriding priority such that “families would on some pretext or another remove the breadwinner from the donation process.” One participant further remarked, “In Chinese culture, the male is still the boss. The father is the breadwinner and everybody has to listen to him.” For these reasons, participants believed gender disparities were prominent among the socioeconomically disadvantaged. They observed that single people thought “it doesn't matter, I don't have to take care of anyone so I don't have to worry about the future.”
Distrust in Modern Medicine
Participants believed that family members held an “innate fear about surgery” and doubted the safety of living kidney donation. They thought that there was a general distrust in modern medicine and science among the older generation. Some felt there was “still some misunderstanding from the general population that the donation of one kidney will interfere or affect their future life expectancy” and “a lack of awareness and a culture to think that donation is normal and common.” They urged for more community education about living kidney donation.
Some noted that older potential donors tended to be motivated by medical necessity while younger donors demonstrated more intensity and enthusiasm to donate. Some surmised that this was related to their education—“the younger donors, they're probably more willing to donate because they are much more education. They read the Internet, read widely before they see us.”
A challenge raised by participants was gauging emotions and motivations about the intention to donate. “Typically for our society, we're not very expressive emotionally so it can be hard to elicit an emotional bond between the donor and recipient.” Therefore, they felt the need to probe more carefully and “dig into the more practical aspects of life to really ascertain how they view their relationship and what motivates them to donate.”
In some countries within the Asia region, clinical decisions regarding the suitability of living kidney donors are made in an environment fraught with moral, legal, cultural and societal complexities. Transplant professionals are acutely conscious of organ trafficking and transplant commercialism activities necessitating their constant vigilance against potential exploitation of vulnerable individuals who come forward as potential donors. However, this burden of personal responsibility is somewhat alleviated by the strict policies which preclude unrelated donors and the mandated ethical committees which conduct stringent reviews of donor cases. Anxieties about the higher risk of ESKD in these populations, economic instabilities and inadequate social security in lower income countries encourage their cautious and conservative approaches to living donor assessment. In making decisions about potential donors, healthcare providers must also take into account the central role of family in decision-making, economic pressures, and fears of modern medicine.
There were discernable differences between this study and the attitudes of transplant nephrologists’ and surgeons toward living kidney donor assessment in the United States, United Kingdom, Europe, Australia and New Zealand26 described in our previous study. These can largely be attributed to the substantial differences in the healthcare systems, particularly public funding for healthcare generally and transplantation specifically, and the relative costs of dialysis and transplantation (dialysis is substantially cheaper and transplantation more expensive in most Asian countries).24,27 Also, there are different religious and societal values which bear influence on community attitudes to organ donation and transplantation.10,13
Although the potential coercion and pressure on donors were raised by participants in both studies, the imminence and threat of financial coercion in this current study compelled a more cautious and guarded approach to donor assessment. This study also highlights the centrality of family in decision-making particularly in “patriarchal” societies where men hold decision-making power; or when the breadwinner is automatically precluded by family members from donating due to overriding economic priorities. In comparison, individual autonomy was emphasized by participants practising in Western countries. The sense of vulnerability driven by poverty and lack of social security in lower-income countries were in contrast to, for example, the reassurance of a donor safety net or waitlisting priority for donors in the United States. Another palpable difference was seen in the demarcation of professional roles. Physicians and surgeons in the current study believed their individual responsibility was solely to provide medical or surgical assessment; they trusted the psychologists and ethical review committees to evaluate the psychosocial suitability of potential donors. Although they acknowledge the lack of independent donor and recipient teams, they believed the independent psychological, social and ethical assessment helped to minimize potential conflict of interest. Nephrologists and surgeons practising in Western countries believed they played a critical role in trying to elicit any dubious motivations and coercion from potential donors.
Transplant professionals in this study were opposed to financial incentives in living kidney donation because of the risk of exploitation, fear of undermining the integrity of transplantation, and the proximity of illegal commercial transplantation. Recently, an international survey on the perceptions and attitudes of nephrologists toward rewards and compensations for kidney donation found that nephrologists from the Middle East were more in favor of financial rewards for living kidney donors and less likely to agree with legislation to prohibit organ sales.28
Commendable efforts have been made globally and locally to prevent commercial transplantation. Since the creation of the Declaration of Istanbul in 2008,18 over 100 countries have strengthened their laws against unethical commercial transplantation.29 At a national level, transplant ethics committees have been established to conduct independent and thorough reviews of cases. In Singapore, living donor organ transplants must be authorized by the Transplant Ethics Committee.30 Despite some decrease in commercial activity in transplant programs, kidney transplantation using paid donors from impoverished communities still ensues.7,31 In Pakistan, approximately half of all transplants are from paid donors.19 In Iran, a government-funded compensated living unrelated kidney donation program was established in 1988 to increase the rate of kidney transplantation; however, the majority of donors comprised of men from low socioeconomic backgrounds who are financially motivated to donate, and there is concern that foreign nationals are still receiving living kidney donor transplantation from paid Iranian donors illegally. Also, the Philippine government commenced an incentivized living kidney program donation in 2002 which ceased in 2008 due to transplant tourism, exploitation, and poor outcomes in kidney vendors.32
This unresolved problem is largely perpetuated by the lack of deceased donor programs in some countries in Asia and sociocultural barriers and reluctance among family members of the affluent to donate.12,31 A strategic framework for optimizing the provision and management of transplantation makes strong recommendations for oversight and regulation of organ procurement and transplantation process, and the development and effective implementation of policies on organ donation.9 On this point, the government in India is in the process of setting up a national organ procurement network which has increased organ retrieval rates.31 Policies may also be developed to address disparities identified in our study, for example, sex inequalities and social disadvantage.
Global efforts are being made to promote structured and legislated deceased donor transplant programs, and to disseminate community education and promote awareness about deceased donation. For example, the Global Alliance for Transplantation was established in 2002 by The Transplantation Society to collect and disseminate global information, expand education in transplantation, and to develop guidelines for organ donation and transplantation. Other initiatives include the development of kidney transplant programs with targeted fellowship training and cross-institutional mentoring between developing and developed transplant centers, training programs for multidisciplinary transplant professionals, and setting up nationally funded organ procurement organizations to ensure transparency and equitable retrieval and allocation.33 Such initiatives require ongoing evaluation.
Educational interventions at a population level, for example, through media campaigns or community programs, need to be developed and implemented to discourage potential kidney vendors who are often unaware of the potential medical, financial, and psychosocial risks of selling their kidney for transplantation, as well as patients who might pursue commercial kidney transplantation.14,34,35 We suggest that further research be conducted to ascertain which educational, legislation, and policy interventions are effective for preventing commercial transplantation both locally and internationally.
In the United States, United Kingdom, and Australia, patients of Asian ethnicity have lower rates of living donor kidney transplantation.36-39 Our findings may offer insights about the socioeconomic and cultural barriers including scepticism about modern medicine, economic priorities, and family dynamics which may contribute to these disparities in access to living kidney donor transplantation. Further, our findings may promote cultural sensitivities and awareness about family dynamics in decision-making and other potential sources of potential coercion or pressure on potential donors.The issues identified could inform the development and evaluation of educational and counselling programs to support informed shared decision making which respects the values of the potential donor and family.
This is the largest qualitative study to document the perspectives, attitudes, and beliefs of transplant professionals on living kidney donor evaluation in Asia. To ensure credibility and confirmability of the findings, we used purposive sampling to capture a relatively wide cross-section of participants in terms of demographic characteristics and clinical experience; and we obtained participant feedback on the preliminary analysis to make certain that the findings reflected the full breadth of their opinions. Of note, some of the quotations were censored to protect anonymity and confidentiality. Because of resources constraints, we were unable to recruit participants from all countries within the region of Asia, and most participants were practicing in Hong Kong, Singapore, and Taiwan; which may limit the potential transferability of the results. Also, we did not attempt to recruit participants from centres involved in paid organ transplantation. Our study does not assess frequency of opinion and therefore suggest that our findings can inform the development of a survey to ascertain the prevalence of opinions on these issues.
Transplant professionals involved in living kidney donor assessment in Asia must navigate ethical, moral, and legal complexities. Vulnerabilities at the individual and societal level are apparent and contribute to barriers and moral quandaries in living kidney donation in Asia. This has driven a manifestly cautious approach, with strong reliance on psychological evaluation, strict eligibility criteria, legislation and independent ethical reviews to counteract any potential for undue coercion and exploitation transplant commercialism. Global efforts must continue to prevent organ trafficking. National guidelines on living kidney donor assessment and donor registries could also facilitate improved processes. In the clinical setting, educational and counselling strategies are needed to address culturally based anxieties and disparities in living kidney donation.
The authors thank all the participants who generously gave their time to share their insights and perspectives. The authors acknowledge the following participants who participated in the study (NB. Only participants who provided written consent to be identified in the acknowledgements are named):
Hong Kong—(Jack) Ng Kit Chung, Simon Hou, KaiMing (KM) Chow, Chow Ngar Yee, Steve Wong, Tong Yuen Fan, Lai Wai Ming, Wai Kit Ma, Thomas Lam, Samuel Fung, William Lee, Pak Chiu (PC) Tong.
India—Ashok Kirpalani, Biju Giopinath, Vivekanand Jha.
Indonesia—Egi Manputty, David Manputty.
Japan—Kenji Yuzawa, Shigeru Satoh, Tomonori Hasegawa.
Singapore—Tee Ping Sing, Vathsala Anantharaman,
Terence Kee, Sobhana Thangaraju, Soo Cheng Goh, Geok Eng Tan, Wai Chong Lye, Jackie Erh, Lay Guat Ng, Yeh Hong Tan.
Taiwan—Po-Chang Lee, Chih-Chi Chu, Yen-Chen Pan,
Daniel Fu-Chang Tsai, Rey-Heng Hu, Chi-Kang Chiang, Tze-Wah Kao, Shou-Meng Wang, Hui-Ying Lin, Ming-HuiLin, Meng-Kun Tsai, Shih-Cheng Liao, Cheng-Chung Fang.
Vietnam—Hai An Ha Phan.
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