Organ donation: Medical ethics and public appeals

At this moment more than 92,000 Americans await an organ transplant that could save their lives. Each number represents a story -- a person with family and friends, school or work, hobbies and pastimes, favorite colors and foods.

Only a small fraction will get the organ or organs they need in any given year. Last year 28,108 transplants were performed, according to statistics from the Organ Procurement and Transplantation Network, administered by United Network for Organ Sharing. The lucky break can be years in coming, and thousands of people die waiting.

This sad reality breeds fear and desperation. These emotions have collided with the information age and scientific advances that allow live-donor transplants. The result is the emergence of new types of public appeals for organs from strangers.

Web sites, such as MatchingDonors.com, aiming to link candidates with potential donors have popped up. People in need of organs, their friends and families have launched their own Web pages. Transplant candidates have even bought billboard space.

The concept is always the same: An organ would come through if only people heard my story, knew about my grandma or grandpa, mom or dad, son or daughter, brother or sister, my best friend.

But these campaigns are controversial and pose serious ethical questions for physicians. For these reasons the American Medical Association at its June Annual Meeting passed policy to help guide doctors through the issues.

Solicitation campaigns have drawn heat because they go outside the UNOS system, which aims to equitably distribute organs. They seek to find a donor for a specific transplant candidate. This practice is common with live donation, which is subject to individual transplant center rules, as opposed to the national system. Anonymous donation through UNOS is the norm with organs from cadavers, but the organization does allow decedents or authorized decision-makers to donate to a specific person.

The fear is that personal campaigns would give people who have the resources to undertake these appeals an unfair advantage over potentially more medically needy candidates on the UNOS waiting list.

Skeptics also worry that people receiving these transplants could be subject to demands of payment beyond travel, lodging, lost wages and medical care from the person donating the organ, even long after the act. Concerns exist that transplant candidates could misrepresent themselves to make their story more compelling to potential donors.

These ethical issues understandably have prevented some physicians from participating in transplants involving organs procured through public solicitation and have made others leery.

But the impact of these public campaigns is truly unknown. These types of donations hold potential for the system as a whole. A publicly told story could increase overall organ donation by generating "sympathy and action in a way that statistics and fact sheets cannot," notes the AMA Council on Ethical and Judicial Affairs in its report laying out the Association's new policy. This could improve the chances of everyone on the waiting list.

Transplant teams could resolve many questions about a potential donor's motives and a recipient's honesty before the procedure could occur.

Because the issues haven't been researched, the AMA guidelines urge physicians to support study of the current system and development of policy based on the results.

In the meantime, the Association has cleared the way for physician participation in transplants resulting from public appeals by deeming these procedures ethical as long as they meet certain criteria. The solicitation must produce a net gain of organs in the pool and must not unreasonably hurt others on the waiting list. Donors must not get pay beyond reimbursement for travel, lodging, lost wages and medical care associated with the transplant. The health care team must fully evaluate the medical and psychosocial suitability of all potential donors.

Yes, the issues are complicated. But the AMA guidance helps physicians who are called upon to get involved in one of these unfolding life stories.