A White Paper Addressing Financial Incentives for Organ Donation Ethics Committee

What is this resource? New white paper from the Ethics Committee Replaces a 1993 white paper Provides ethical analysis of financial incentives for organ donation in a federally regulated system Does not address if a federally-regulated system for financial incentives would be ethically sound Target audience: Families or surrogates, OPOs, transplant hospitals A white paper is an authoritative report or guide that informs readers concisely about a complex issue and presents the issuing body's philosophy on the matter. It is meant to help readers understand an issue, solve a problem, or make a decision. A white paper is resource for voluntary review and consideration by the transplant community or members of the general public. This white paper reflects the opinions of the Ethics Committee. The white paper would have not have any binding impact on the OPTN and if supported it would not be a directive for the OPTN begin the a study on financial incentives for organ donation. At this stage, the Committee is requesting specific feedback regarding if the transplant community and general public could support a pilot study to investigate financial incentives for organ donation. The original white paper addressing financial incentives for organ donation was produced in 1993 and had not been revised since that time. The Committee determined that the original paper was no longer accurate nor relevant. The original paper was based on literature, public surveys and polls more than 20 years old. The original white paper only addresses financial incentives for deceased organ donation and preceded new donation strategies including paired donation, donation after circulatory death and new organ allocation systems that evolved of the past 20 years. The white paper provides an ethical analysis of financial incentives for organ donation in a federal regulated system. Of note, the Ethics Committee deliberately refrained form taking a position on whether a federally-regulated system of financial incentives would be ethically sound and it would be contingent upon information that could be learned if NOTA could be amended to allow for a pilot trial. This resource could be helpful to families or surrogates, OPOs or hospitals considering the topic of financial incentives for organ donation.  

What the White Paper Does Enumerates 4 ethical considerations for financial incentives in a regulated market  Encompasses current literature & empirical studies  Reflects what is currently known about public attitudes  Makes an appeal for scientific inquiry, including pilot trials  Committee members performed a thorough literature review and identified numerous questions or issues that should be reconsidered in this new version of this white paper. The Committee chose to have the white paper focus on financial “incentives,” which are provided to donors as a direct benefit (or intervention) for the purpose of encouraging donation, over and beyond compensation for donation expenses. The Committee examined four key ethical considerations of providing financial incentives in a government-regulated system including 1) Undue Inducement to Donate, 2) “Crowding Out”, 3) Exploitation, and 4) Commodification and each topic addressed in the body of the white paper.

What the White Paper Does Not Do Take a position on whether financial incentives are ethically permissible or not Discuss unregulated markets  Discuss legal considerations or process steps for amending NOTA (outside scope) Require or dictate any action; ethical recommendations only  Recommend amending NOTA Arguments for and against a federally-regulated system are rooted in theoretical and hypothetical constructs and, as such, dialogue on the issue has reached a point of stalemate. We conclude that the transplant community will remain at a stalemate unless we perform pilot studies, recognizing that NOTA would need to be congressionally amended before such research could be legally permitted. Additionally, the financial and transplant-system based logistics of carrying out a pilot study with necessary ethical oversight and precautions would also need to be solidified before taking it on. The white paper does take a position in favor of conducting a pilot study, (but not for changing policy at this time), in order to better understand the ethical concerns that can only be gleaned through empirical research and actual practice in a controlled, scientific fashion.”

How will members access this resource? OPTN website: all white papers available under the Resources tab, select Ethics If approved, this white paper will be available on the OPTN website, along with all other white papers.

Questions? Peter Reese, M.D. Committee Chair peter.reese@uphs.upenn.edu Lee Bolton Committee Liaison lee.bolton@unos.org

Background and Results of Ethical Analysis The white paper focuses on financial incentives to encourage both living and deceased donation and addresses four key ethical considerations: Undue Inducement to Donate “Crowding Out” Exploitation Commodification Committee members performed a thorough literature review and identified numerous questions or issues that should be reconsidered in this new version of this white paper. The Committee chose to have the white paper focus on financial “incentives,” which are provided to donors as a direct benefit (or intervention) for the purpose of encouraging donation, over and beyond compensation for donation expenses. The Committee examined four key ethical considerations of providing financial incentives in a government-regulated system including 1) Undue Inducement to Donate, 2) “Crowding Out”, 3) Exploitation, and 4) Commodification and each topic addressed in the body of the white paper.