There's a lot of discussion these days about clinical trials of incentives for organ donation as a way of increasing supply.
Here's a blog post from the AST, the American Society of Transplantation, on removing financial disincentives: The Cost of Giving
" it is increasingly obvious that we impose on donors’ financial risk, a concept that threatens our perceptions of donation as an altruistic act. Gill et al (JASN, 2014 Jul 17, epub) documented, in the recent economic downturn, greatest decline in living donation among those most challenged socioeconomically, indicating the role of financial risk in discouraging “altruistic” donors.
All this is occurring against a backdrop of intense controversy regarding “incentives” for donation that has raged for years, incorporating both national and global perspectives on ethics, economics, black markets, free markets, and so on. Amidst so much controversy, though, some light is beginning to emerge. Strong ethical and economic arguments can be advanced for and against incentives. The Declaration of Istanbul outlines important precepts that address unethical practices, including underground markets, on a global basis. However, in the United States, with a well-developed organ recovery infrastructure and rule of law, examples from the underground market (as were the basis of a recent New York Times expose) may be less relevant. There is emerging support in the US for a regulated infrastructure that could address the financial implications of organ donation. The National Living Donor Assistance Center (NLDAC) already offers limited assistance for those means-tested as unable themselves to underwrite the cost of donation. Extending assistance to eliminate all financial costs regardless of means, including access to healthcare, is now considered a mainstream view (far from the reception for a similar proposal from a small working group eight years ago: Gaston et al, AJT 6: 2548, 2006).
...
"Participants in two recent meetings (both held in Chicago in June and sponsored in part by AST) will soon be publishing white papers that seek to clarify the discussion regarding compensation of living donors in the US. It is obvious that a great deal can be done within NOTA to remove disincentives (as both white papers are likely to endorse). In medicine, it is usually desirable to address controversy with evidence, as might be obtained via limited demonstration projects of targeted incentives. Though these would likely require amendment of NOTA, such has already occurred twice with the Charlie Norwood and HOPE acts, both crafted in response to a changing environment and both endorsed by AST. Our task, if we are to do everything possible for our wait-listed patients and protecting all the interests of potential donors, is to make sure we get the nuances right."
And here is an open letter, signed by a variety of interested parties
HOW TO END THE WAIT FOR ORGAN TRANSPLANTS
"We support current efforts to prevent diabetes and hypertension and to make the donation process fairer and more efficient, but they will not resolve the shortage. Additional approaches must be tried. Sadly, transplant policy has been governed by an unsubstantiated assumption: that donors cannot receive benefits for donating without being exploited or coerced. It is critical to examine that assumption. We hereby call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants."
Here's a blog post from the AST, the American Society of Transplantation, on removing financial disincentives: The Cost of Giving
" it is increasingly obvious that we impose on donors’ financial risk, a concept that threatens our perceptions of donation as an altruistic act. Gill et al (JASN, 2014 Jul 17, epub) documented, in the recent economic downturn, greatest decline in living donation among those most challenged socioeconomically, indicating the role of financial risk in discouraging “altruistic” donors.
All this is occurring against a backdrop of intense controversy regarding “incentives” for donation that has raged for years, incorporating both national and global perspectives on ethics, economics, black markets, free markets, and so on. Amidst so much controversy, though, some light is beginning to emerge. Strong ethical and economic arguments can be advanced for and against incentives. The Declaration of Istanbul outlines important precepts that address unethical practices, including underground markets, on a global basis. However, in the United States, with a well-developed organ recovery infrastructure and rule of law, examples from the underground market (as were the basis of a recent New York Times expose) may be less relevant. There is emerging support in the US for a regulated infrastructure that could address the financial implications of organ donation. The National Living Donor Assistance Center (NLDAC) already offers limited assistance for those means-tested as unable themselves to underwrite the cost of donation. Extending assistance to eliminate all financial costs regardless of means, including access to healthcare, is now considered a mainstream view (far from the reception for a similar proposal from a small working group eight years ago: Gaston et al, AJT 6: 2548, 2006).
...
"Participants in two recent meetings (both held in Chicago in June and sponsored in part by AST) will soon be publishing white papers that seek to clarify the discussion regarding compensation of living donors in the US. It is obvious that a great deal can be done within NOTA to remove disincentives (as both white papers are likely to endorse). In medicine, it is usually desirable to address controversy with evidence, as might be obtained via limited demonstration projects of targeted incentives. Though these would likely require amendment of NOTA, such has already occurred twice with the Charlie Norwood and HOPE acts, both crafted in response to a changing environment and both endorsed by AST. Our task, if we are to do everything possible for our wait-listed patients and protecting all the interests of potential donors, is to make sure we get the nuances right."
And here is an open letter, signed by a variety of interested parties
HOW TO END THE WAIT FOR ORGAN TRANSPLANTS
"We support current efforts to prevent diabetes and hypertension and to make the donation process fairer and more efficient, but they will not resolve the shortage. Additional approaches must be tried. Sadly, transplant policy has been governed by an unsubstantiated assumption: that donors cannot receive benefits for donating without being exploited or coerced. It is critical to examine that assumption. We hereby call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants."
Another very substantial contribution in this open letter is: "To ensure equality, private transactions between individuals should remain prohibited. Transplants and benefits should be distributed by a government or government-authorized nonprofit such as the United Network for Organ Sharing (UNOS)." Those concerned about the influence of "Repugnance" should emphasize this very important element in the re-examination of NOTA. It is very clear that the 30 years ago, the repugnance was heavily influenced by the fear of rich people exploiting the poor. The central idea of the government substantially supporting donors to donate to a common pool should abrogate that part of the concern and help make it more acceptable. Thank you Professor for keeping this important issue up front
ReplyDeletePlease see TEDMED on the topic of removing disincentives. The actual video will not be available for public viewing for a couple of months, but Sigrid will gladly provide the text and slides for anyone who is interested.
ReplyDeleteSigrid@ethical-solutions.org