Hand Transplant Transparency Nightmares

Sheila Advento, who gained two hands at the cost of her kidneys, says she was never told of that risk, and her doctors could not produce any documentation that they ever did so. Photo by Dan Winters, all rights reserved.

This February WIRED published my investigative story “The Devastating Allure of Medical Miracles,” which pulls aside the operating room curtain to reveal an experimental field with serious lapses in transparency, ethics, and patient care, and astounding levels of patient suffering that have gone unreported. The abundant glowing press and publicity about these experimental transplants over the past 20 years in the US consistently conveys an impression of high success rates and few serious complications. In fact, out of roughly 30 hand-tranpslant recipients in the US, three patients have died of causes clearly or possibly tied to their transplants, seven have had their transplants removed, and at least ten have suffered serious, life-changing side-effects or complications. Several of these people told me they were not adequately told of these risks beforehand. Another 10 patients or so, meantime, have so far done pretty well, and the remaining 10 have outcomes in between these extremes.

One can — and should — argue over whether these numbers are acceptable for a procedure that enhances life rather than saving or prolonging it. (Even routine solid-organ transplants tend to shorten lifespan sharply.) But it is arguable — a basic requirement of medicine and science — that the researchers who’ve done this work should have made these numbers plain to the public so that they could be discussed frankly  by the field, the regulators, the public, and potential new patients. Yet these numbers were simply not available — were in fact hidden, with multiple complications and at least one death kept out of the public eye — until they were gathered and exposed by my 9 months of reporting, which drew on patient records and accounts, interviews and correspondence with transplant-center team members who gave me current (but unpublished) accounts of previously unknown bad outcomes and complications, and data collected by bioethicist Emily Herrington, of the University of Pittsburgh. (All these outcomes were then carefully independently fact-checked and confirmed.)

The human cost of both these complications and of the lack of transparency about them — a cost tallied in immeasurable pain and suffering, in death, debility, lost income, in patients’ feelings of abandonment, betrayal, and moral horror — is spectacularly high. Even at 8,000 words, the story that WIRED printed was too small to hold it all. The field continues largely as it did before.