Risk Assessment

This week we learned that four Chicago organ transplant recipients got HIV and hepatitis C from a donor who was considered at high risk of carrying the diseases. These cases are very rare—it's been two decades since the HIV virus was transmitted to an organ recipient. But it turns out that donations by those considered high risk are far more common than most Americans might think. About 9 percent of all organs come from people who have reported the kind of behavior (injecting recreational drugs, spending time in jail or men having sex with other men) that puts them at higher risk for HIV and other diseases.

All donors are tested for the virus, and it's against the law to transplant an organ from a known HIV-positive donor. But it's legal to do so with a donor in the high-risk category, as long as he or she tests negative for the virus. However there's still a small window of time between when someone contracts the virus (usually less than a month) and when it shows up in a test. So if a donor dies in that time period, he or she may test negative but still be capable of transmitting the disease.

So why do surgeons and organ recipients take the chance of infecting their patients (as small as it might be)? The numbers speak for themselves: More than 98,000 Americans are on the wait list for an organ, and last year only 14,755 people donated organs. More than 6,000 people die each year because they fail to receive one in time. "There are many, many more people on the transplant waiting list than there are organs. That's forcing organ-procurement organizations to take donors that might otherwise be excluded," explains Matthew Kuehnert, director of blood, organ and tissue safety for the U.S. Centers for Disease Control. In fact, the risk-benefit equation is so clear that the CDC guidelines actually spell it out saying that high-risk donors are OK if "the risk to the recipient of not performing the transplant is deemed to be greater than the risk of HIV transmission and disease."

Those same CDC guidelines suggest—but do not require—getting the recipient's "informed consent regarding the possibility of HIV transmission." And for now, no one is tracking how often surgeons tell patients that they're receiving an organ from a high-risk donor. The three well-respected Chicago hospitals that in January transplanted the HIV-infected organs cannot, because of federal privacy laws, reveal what they told the recipients about the donor. But a lawyer for one of the patients has revealed that she was not told before surgery that her organ came from a high-risk donor.

So the question remains, should informed consent be mandated? Not necessarily, says Dr. Jim Burdick, who runs the division of transplantation for the U.S. Health Resources and Services Administration, which oversees organ transplantation. "It's not something you can easily put in regulatory text that would be overseen by some sort of policing action." Also, some surgeons don't believe it's in the best interests of the patient. "We're offering them a terrible choice if we say, 'we have an organ, it's probably OK, but there might be a problem'," says Dr. Jay Fishman, director of transplant infectious disease for Harvard's Massachusetts General Hospital. "That's not the kind of decision that patients should have to make."

Others disagree. "There's a need for more disclosure of risk information to potential recipients," says Arthur Caplan, chair of the department of medical ethics at the University of Pennsylvania. And recipients may very well decide to take a chance on an organ from a high-risk donor. "It's hard to say no to it because there aren't that many organs coming up," says Caplan. "Something looks better than nothing."