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Rise of hand, face transplants prompts look at US donor rules

Regulators review consent process in new landscape

Lindsay Aronson Ess, 30, worked on her dexterity in physical therapy in Richmond, Va. She had a double hand transplant after losing her hands and feet to an infection in 2007.
Lindsay Aronson Ess, 30, worked on her dexterity in physical therapy in Richmond, Va. She had a double hand transplant after losing her hands and feet to an infection in 2007.Steve Helber/associated press

WASHINGTON — Signing up to become an organ donor may get more complicated than just checking a box on your driver’s license because of the prospect of hand or face donations.

The government is preparing to regulate the new field of hand and face transplants like it does standard organ transplants, giving more Americans who are disabled or disfigured by injury, illness or combat a chance at this radical kind of reconstruction.

Among the first challenges is deciding how people should consent to donate these very visible body parts that could improve someone’s quality of life — without deterring them from traditional donation of hearts, lungs, and other internal organs needed to save lives.


Dr. Suzanne McDiarmid, who chairs the committee of the United Network for Organ Sharing that will develop the new policies, said the goal is to make clear to potential donors and their families that an organ is now defined as including a hand or a face.

‘‘Otherwise we could undermine public trust,’’ said McDiarmid, a transplant specialist at the University of California, Los Angeles.

‘‘The consent process for the life-saving organs should not, must not, be derailed by a consent process for a different kind of organ, that the public might think of as being very different from donating a kidney or a heart, or a liver,’’ she added.

These so-called ‘‘reconstructive transplants’’ are experimental, and rare. The best estimates are that 27 hand transplants have been performed in the United States since 1999 and about seven partial or full face transplants since 2008, said Dr. Vijay Gorantla, medical director of the University of Pittsburgh reconstructive transplant program.

But they are gradually increasing as more US hospitals offer the complex surgeries, the Defense Department funds research into the approach for wounded veterans — and as transplant recipients go public to say how the surgeries have improved their lives.


‘‘These hands are blessed hands to me,’’ said Lindsay Aronson Ess, 30, of Richmond, who received a double hand transplant in 2011. She had lost her hands and feet to a life-threatening infection in 2007.

Until now, deciding who qualifies for a hand or face transplant, and how to find a match and approach a potential donor’s family, all have been done on an informal, case-by-case basis.

There has been no way to tell which hospitals’ techniques work best and how patients ultimately fare. There have been reports of two deaths related to face transplants in other countries, and some transplanted hands have had to be amputated. Patients must take lifelong anti-rejection medications that put them at risk of infections, cancer, and other side effects.

In July, government regulations go into effect making hand and face transplants subject to the same strict oversight by the United Network for Organ Sharing, which manages the US transplant program, as heart or kidney transplants.