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Disclosing organ transplant risks: Now or later?

That’s the conclusion of University of Pennsylvania scientists and ethicists who want to overhaul a piecemeal system they say fails to adequately inform some patients of potential problems while allowing others to "cherry-pick" donors, accepting or rejecting specific organs based on certain risk factors at the time of transplant.

“What they think might be based on fear or bias,” said Art Caplan, director of the Center for Bioethics at the university’s school of medicine and co-author of an article in the latest issue of the New England Journal of Medicine.

But a member of the United Network for Organ Sharing, or UNOS, the nation’s clearinghouse for organ allocation, said that while he supports thoughtful consent, he’s seen no evidence that the current system is flawed.

“This proposal is a solution in search of a problem,” said Dr. Benjamin Hippen, a transplant nephrologist on the UNOS ethics committee.

The Pennsylvania authors said the issue was highlighted last year by the case of a Chicago man whose transplanted organs infected four people with HIV and hepatitis C. Although the 38-year-old car crash victim did not test positive for HIV at the time of his death, local officials knew the man had engaged in behaviors that raised his risk of infection. Recipients were not informed of the risks at the time of transplant, and at least one patient now plans to sue the transplant agency and the hospital.

Under the current system, warning patients about potential transplant problems is an "unknown and unregulated" practice that varies widely by region, hospital and even surgeon, the authors said.

"Disclosure is basically driven by a particular organ transplant team in a particular place," Caplan noted.

UNOS policy requires kidney patients to decide in advance whether they'll accept organs from "expanded criteria" donors, those who are older or have a history of high blood pressure or diabetes.After the Chicago incident, UNOS added a requirement that recipients be informed if organs come from certain high-risk donors, including those considered at risk for HIV.

Advance warning, but no individual details

But Caplan and his colleagues, led by bioethicist Dr. Scott Halpern, now are calling on UNOS to create a new, standardized system that would require patients to be informed of all risks of surgery in advance and to decide whether they would accept so-called “suboptimal” organs at the time they’re placed on the transplant waiting list.

Advance warnings would cover organs from donors identified as high-risk by the federal Centers for Disease Control and Prevention, including homosexual men, injection drug users, prostitutes, people who’ve received certain blood products, those exposed to HIV and people who’ve been jailed.

At the same time, the new plan would bar patients from knowing risks posed by particular donors. The authors contend disclosing individual details wastes time, provides no better ability to evaluate risk and may result in choices based on bias and fear instead of medical need.

“Allowing a patient to cherry-pick his organs by telling him everything about a potential donor creates the potential for discrimination, inefficiency and inequity in how organs are allocated,” Halpern said.

Change is necessary, the authors say, in a country where nearly 100,000 people await organs and nearly 10 percent die before they receive a transplant.

“If unblemished or ‘standard-criteria’ donors were plentiful, there would be no need to use riskier organs,” the authors write.

Rejecting organs could delay transplant

Because patients might be offered marginal organs, they need to understand what accepting them might mean, said Caplan, who is also a bioethics columnist for Even with strict screening, there’s still a remote chance that some organs could be infected or otherwise damaged.

At the same time, patients need to know that rejecting substandard organs could reduce the available pool, delaying transplantation and possibly resulting in death before a standard organ becomes available.

“Most liver patients, they’re not going to pass over anything that might help,” Caplan observed. “Liver and hearts, boy, if they pass, they’re not going to get another chance.”

In a statement released Wednesday, UNOS officials said they continue to support notifying transplant candidates about both general and individual risks.

"With any specific transplant opportunity, the level of risk may be acceptable for some candidates but unacceptable for others," they said.

Hippen said he would be cautious about changing UNOS policy without good evidence to support doing so. There's no data now to suggest that patients who accept nonstandard organs do worse than others, or that there's any inequity, inefficiency or "gaming" of the allocation system, he noted.

"Until then, humble, prudent judgment coupled with clinical experience focused on the specifics of individual donors and recipients might not be so terrible a substitute," he said. "News reports notwithstanding, it has worked pretty well to date."

Patient: Tell them now and later

At least one patient said the solution is to offer transplant recipients the chance to reject or accept substandard organs in advance — and again when the organ becomes available.

Ron Taubman, a 63-year-old retired real estate broker, received a kidney-pancreas transplant in 2001. The Northridge, Calif., man said transplant recipients may opt only for premium organs when they’re first placed on the waiting list. But that view may change the longer they wait.

“I was dying seven years ago; I nearly died twice,” Taubman said. “This organ is a lifesaving effort. If there was a slight risk or a risk, if I was there, I’d take it.”