White Coat Notes

‘Bad things can happen’: Explaining experimental surgery to children

Boston Children’s Hospital announced today that it plans to open the first-ever hand transplant program for children and teens, Liz Kowalczyk wrote in today’s Boston Globe. The hospital ethics board has required that child—and not just their parents—agree to undergo the procedure, a requirement that is typical in research involving minors.

In addition to creating a consent form for adults that explains the risks and possible outcomes of transplantation, the hospital drafted an assent form that explains the complicated process in simple terms.

“Hand transplantation is when hands are taken off a person who has died and given to a person who needs them,” it reads. “We want to see whether these hands will help children do normal things like picking up a cup or brushing teeth. . . We think that you might even be more independent and happier with your abilities if you joined this study, but because this has never been done before for children or adolescents, we cannot know ahead of time for sure.”

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It goes on to explain how the process works, the various imaging tests that may be necessary, and the medications and physical therapy that would be required after the procedure. It explains that a child might go through the process and may end up not receiving new hands.

“You do not have to join this study,” the form reads. “It is up to you. You can say okay now and change your mind later before you have the new hand(s). All you have to do is tell us you want to stop. No one will be mad at you if you don’t want to be in the study. Once you have the hand transplants, though, it will be very hard to stop because removing them from you will hurt and your arms may not function as well as they did before transplant. So you have to make sure that you really want to have the hand transplants – even though it means that bad things can happen.”

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