For the past two years, the British Columbia Transplant Society (BCTS) has been involved in a groundbreaking research initiative exploring a very different kind of living organ donor. Prompted by the results of a 1997 opinion poll showing that 32 per cent of surveyed participants would be willing to donate a kidney while alive to a stranger, Bill Barrable, CEO of BCTS, was keen to investigate the viability of using living anonymous donors (LADs) as one potential source for narrowing the supply/demand gap of transplantable organs. Moreover, Canada’s increasingly effective motor vehicle safety legislation, has created a very different mortality profile than other countries such as the US or Spain. We now face a situation where cadaveric donors will continue to decline, thus, highlighting the increasing importance of living donor transplants.
On Barrable’s initiative, research psychologists Dr. Antonia Henderson and Dr Monica Landolt headed up a project to explore the psychological and social make-up of the LAD. Surprising and promising results are now coming to light.
The first phase, designed to tap the public pulse about living anonymous donation, replicated and expanded the 1997 opinion poll. Interestingly, in spite of providing an information synopsis about the challenges involved in living donation, 29 per cent of participants still indicated that they would be willing to be LADs (not statistically differing from the 1997 results of 32 per cent). Self-reported LADs were also more likely than self-reported non-donors to have registered as cadaveric donors and to have attitudes that were compatible with wanting to donate to a stranger. We were encouraged by these results that suggested a significant minority of British Columbians supported the idea of living anonymous donation, and that at least some of these individuals might actually consider being LADs themselves.However, although these results, along with other surveys, consistently show public support for the use of LADs as a potential donor source, this idea has not been fully embraced by the medical community. Living anonymous donation has had limited practice in the United States, is discouraged in Canada, and is censured or illegal in most of Europe. Reservations focus on the belief that LADs might be psychologically unstable and thus, unsuitable donors. We wanted to provide information on the psychosocial profile and motivations of the LAD to inform future policy development.
In the next phase, we focused on 93 unsolicited individuals who contacted BCTS over the past two years wanting to donate a kidney, while alive, anonymously to anyone in need. Of these, 43 participated in the study, completing two extensive questionnaires assessing psychological stability and taking part in an in-depth psychosocial interview exploring relationship experiences, belief systems, self-perceptions, and thoughts and feelings about living donation, and living anonymous donation. We assessed psychological health, suitability to be a donor, and commitment to donation and found that almost half of the 43 participants passed the stringent criteria to be considered potential-LADs if and when a programme should be developed. We found that our potential-LADs tended to be motivated by altruism, where donating a kidney became the next level of giving in a life already rich with volunteer activities, community work, regular blood donation, and the like. These individuals also tended to have a deep and integrated spiritual belief system that guided them in how they lived their lives. Though not necessarily affiliated with an organized religion, they had a strong sense of purpose and commitment towards making the world a better place to live. It appears from the findings to date, that fears about all potential-LADs being psychologically unstable and thus poor donor candidates may well be unfounded.
The final phase of the research, currently being analyzed, looks at a community sample of 1200 Lower Mainland individuals surveyed about their willingness to donate to particular individuals. One hundred and fifty of these participants completed a questionnaire and interview follow-up identical to those completed by our unsolicited sample above. With the additional data from the community sample, we will be able to further refine potential policy issues around living anonymous donation. For example, if a LAD programme were implemented, how might we recruit potential LADs, or should we rely solely on unsolicited potential-LADs? Should assessment criteria for potential-LADs be the same as living related donors, or more stringent, since the benefit to the LAD is less evident? How crucial is it that donor and recipient remain anonymous? And how is this anonymity logistically maintained? These and other policy issues will be tackled by the principal investigators and a LAD policy team over the next several months as we work to outline policy recommendations based on the study.