Kidney recipients, donors want info about each other's health

Living kidney donors and their recipients would like to share more health information before the transplant surgery, a new survey indicates.

Currently, patients must be informed if they're at risk for acquiring hepatitis or HIV from a donor organ, researchers write in the Clinical Journal of the American Society of Nephrology.

Beyond that, transplant professionals cannot share information without the permission of both parties, senior author Dr. Lainie Friedman Ross of the MacLean Center for Clinical Medical Ethics at the University of Chicago told Reuters Health by email.

"Information about the donor may be of significant interest to the recipient to decide whether to accept the organ," she and her colleagues explain in the study. "Likewise, a potential donor may want information about an intended recipient to decide whether to offer the organ."

In many cases, Ross said, transplant candidates and their potential donors are first-degree relatives, in which case "they can tell each other whatever they want, and often since their lives are intertwined, much of this information is known."

Formally, however, "donors are not given any specific information about the recipient, just told they are 'healthy enough to benefit from a transplant'," Ross said.

She and her team analysed survey responses from 160 potential or actual donors and 76 potential or actual kidney transplant recipients.

Almost 80 per cent believed donors should have access to information about the recipient's health that could potentially affect the success of the transplant.

And almost 90 per cent agreed with giving general information about the donor's health to the recipient.

Donors and recipients believed that a donor should know about the recipient's wait time for a kidney, life expectancy without a transplant and other health problems, including problems with medications, smoking status and drug or alcohol abuse.

More than half of recipients were also willing to disclose psychiatric disturbances and high-risk sex, but few donors wanted this information.

Most people preferred to have the transplant team deliver the health information, rather than the donors or recipients themselves.

Few people said they would want other information, like criminal record, sexual orientation, employment status or religion.

If a potential donor were to be rejected by the medical team, three out of four people said recipients should not be told why.

"You have to protect (the) privacy of the donor whilst respecting the rights of the recipient to know what risks they are taking on," said Dr. James Neuberger, a consultant physician at University Hospital Birmingham in the UK who was not part of the new study.

"All organs are secondhand," whether from a deceased or living donor, and they come with risks, said Neuberger.

"Patients expect quite rightly to be told about those risks," he told Reuters Health.

But even living donors, who are close family members, may not want every risky thing they've done to be shared, he said.

One danger of sharing more information is that potential donors might discriminate against certain health behaviours of recipients even if they do not correlate with graft or patient survival, Ross said.

"The more the donor is told, the more he or she may decide against donating," she said.

"On the flip side, there is a danger in not making that information available," she said. "If donors do not believe that they have adequate information, they may not feel that they are giving a fully informed consent and that could be a problem."

"I support disclosure of information that is relevant to the transplant," she said. "Just because you are in need of a kidney does not mean you lose all of your rights to privacy, but donors need information that may affect their decision about donation."