The Committee (ACOT) met on May 9-10, 2005, in Rockville, MD, and unanimously agreed on the following recommendation:
Recommendation 42: ACOT recommends to the Secretary that the OPTN be asked to expeditiously consider all issues associated with the development of a registry for matching living donors and recipients, paying particular attention to informed consent and the monitoring of long-term outcomes of the donors.
ACOT has heard from a number of interested parties, including public comments from living donors and family members of living donors who later had adverse outcomes, regarding concerns about the proliferation of websites that solicit organ donation from living donors. ACOT understands that the OPTN has formed an Ad Hoc Committee on Public Solicitation for Donation that is in the process of soliciting public comment to get input on Internet facilitated transplantation. ACOT believes that the OPTN should continue to move this process along quickly, including the consideration of having the OPTN develop a registry for matching living donors and recipients.
ACOT Recommendations 1-7 addressed many of the issues surrounding living donation, and ACOT is concerned that a number of its initial recommendations have not been fully implemented. Recommendation 1 urged implementation of ethical principles and informed consent standards for all living donors. Recommendation 3 urged creation of a database of health outcomes of all living donors. In particular, ACOT is concerned that provisions in living donor informed consent cannot be fulfilled without the existence of a living donor registry.