A troubling case in which a high-risk organ donor infected four patients with the AIDS virus and hepatitis has led medical ethicists to warn that patients need to know more about whose organs they’re getting.

Public health officials said Tuesday the Chicago case is the first known instance of HIV transmission through organ transplants since 1986.

It’s also the first ever known instance in which one organ donor has spread hepatitis C and HIV at the same time, said Dr. Matt Kuehnert of the federal Centers for Disease Control and Prevention.

The CDC and other public health officials are investigating the Chicago cases.

But they emphasized that the risk of getting any disease from transplanted organs is less than 0.01 percent. Noting that more than 400,000 transplants have occurred nationwide in the past two decades, they called the transplant system safe.

Failure of standard testing

But it’s not 100 percent safe: Standard testing failed to detect HIV in the Chicago case. People waiting for organs should be told as much pertinent information as possible about potential donors, said University of Pennsylvania medical ethicist Art Caplan.

Transplant surgeons generally decide what information is given to patients and their families. Sometimes it’s not much because of the circumstances — patients are very sick, organs are scarce and usable for only a short time, Caplan said.

“You really have to put your faith in the transplant surgeon,” agreed Ronald Taubman, who received a kidney-pancreas transplant six years ago.

The suburban Los Angeles man said he rejected one kidney because of concerns raised by his doctor, and was lucky that a better one became available.

But Caplan noted that not all patients have that choice.

“It’s obviously very, very difficult because the availability of organs is such that if you pass, there’s a possibility you won’t get one,” he said. Still, the Chicago case shows that to make an informed decision, patients “have a right to more information” than doctors often give, Caplan said.

Not every aspect of a potential donor’s life is fair game, but patients have a right to know “if a donor dropped dead in a bathhouse with a needle in his arm,” Caplan said.

'Individual's right to decide'

It’s not clear why the donor in the Chicago case was considered high-risk, or how much the four patients were told. But University of Minnesota ethicist Jeffrey Kahn said it underscores the importance of the consent process “and an individual’s right to decide what’s right for them.”

Officials declined Tuesday to identify the Chicago patients, the donor or what organs were transplanted.

The four patients got their organs in January at Northwestern Memorial Hospital, Rush University Medical Center and the University of Chicago Medical Center. Two had their operation at the University of Chicago hospital.

That hospital issued a statement Tuesday saying the donor died after “traumatic injury” but wouldn’t provide more detail.

The cases came to light within the past two weeks after one of the patients was evaluated for a possible “re-transplant” and had blood tests, the hospital said.

A screening questionnaire revealed that the donor had engaged in high-risk behaviors, said Alison Smith of Gift of Hope Organ & Tissue Donor Network, the Elmhurst, Ill., group that procured the organs. She declined to elaborate, citing privacy concerns.

High-risk behaviors include gay men having sex within the past five years, people having sex for money or drugs within the past five years, and intravenous use of recreational drugs within the past five years. The CDC says people in any of these categories should be excluded as organ donors unless the need outweighs the risks.

The Chicago hospitals were told that the donor was high-risk, but none would say what information was relayed to the patients or their families.

Initial tests on the donor for HIV, hepatitis and other conditions came back negative, most likely because the donor had acquired the infections in the last three weeks before death.

It takes 22 days from the time of exposure to HIV for antibodies to be picked up in the standard HIV test. During that time, a person can still be infectious.

Because of that lag, there’s growing support for a newer costlier test that can detect the virus earlier but takes several hours longer to get results.

Not many centers use it, including the Gift of Hope. Because of the Chicago cases, momentum favoring it likely will grow, said Dr. Michael Millis, chief of transplantation at the University of Chicago Medical Center.

“We have to reassure the person that’s coming in for a transplant tomorrow that the transplant system is safe,” said Millis, who supports use of the newer test. “Can we do better? I think we can.”