A hot topic today in the transplant world is that of the potential recipient being given enough information about risk factors relating to a potential donor. In fact, researchers at Penn have proposed major changes in informed consent policy.

Recently, there have been several cases in the news where organ recipients have received organs with serious diseases, including cancer and infectious diseases. Apparently, there are wide variations in reporting of patient risk factors from region to region. In fact, current UNOS regulations state that potential kidney recipients NOT be allowed to "cherry pick" a kidney unless it is from an expanded criteria donor, although adherence to this is highly variable.

In 2004, there was a case involving a man from Arkansas who had a fever and severe mental status changes and a diagnosis of subarachnoid hemorrhage (bleeing in one of the layers covering the brain). He was declared brain dead, and his lungs, kidneys, and liver were donated. The patient who received the lungs died in surgery, and the other 3 patients died within the first 5 weeks after transplant. It was determined that the donor had undiagnosed Rabies at the time of his death.

Could this have been prevented? Maybe, if there was a suspicion of Rabies, but with a sub-arachnoid hemorrhage, Rabies was probably low on the differential list. And while ideally it would be great to screen for every disease imaginable, it certainly isn't practical. In addition to cost, there is also the fact that many disease screenings would take more than several hours, by which time the organ will not be viable. Plus, this was the first time that this has EVER occurred, and the odds of it occurring again are very low. It would seem that there are many that expect perfection when it comes to medical and surgical issues, but since we are human, that is simply unrealistic.

In another case, a 15 year old boy died from what was originally diagnosed as Meningitis, but later found to be a rare Lymphoma. The recipients of his liver and pancreas both died, while the 2 that received his kidneys had them removed, and are now receiving chemotherapy. In this case, a wrong diagnosis was deadly to some of the recipients.

And the one case that probably had the most influence in the push for full disclosure with organ donations is that of a 38 year old sexually-active gay man who ultimately died as a result of a car crash, and whose organs were donated to 4 people. His HIV and Hepatitis screens were negative, but it ended up that all 4 recipients of his organs tested positive for Hepatitis C and HIV. There is legal action pending, with one of the recipients claiming that she was never told that the donor was high risk. I'm sure there are many other cases similar to these.

Being a health care professional, I'm sure that I'm probably more aware than a "layperson" of the risks involved with transplant, but when I had my initial transplant evaluation, they were pretty much up front that while they do everything they can to minimize risks, there are problems that may occur. After all, you are putting an organ that has a constant blood supply running through it from a donor to a recipient; the possibilities of passing on something potentially dangerous from donor to recipient is significant, and is complicated by the fact that after transplant, the immune system is suppressed. This increases the chance of both infection and certain cancers.

In the above case of the HIV and Hepatitis C transmission, it's alleged that both the Regional Transplant Agency and the Hospital both knew of the donor's high risk lifestyle, yet didn't inform the patient. IF this is the case, I feel that what they did was wrong. The potential recipient has the right to know of high-risk lifestyles and pertinent medical information, so that he/she can consider this in the decision on whether to accept the organ.

When I was called for the kidney I now have, I was told that the donor had a history of drug abuse, but not of IV drug use. Of course, with IV drug use, that is "high risk" for Hepatitis (B and C) and HIV, and I did consider this. Her screening was negative, but if she had contracted any of these diseases recently, it wouldn't necessarily show up. I factored in that she was in a rehab for several months prior to her death, and took a chance that her risk was minimal while there, and based part of my decision on that.

It will be interesting to see which policy, if any, they come up with, as well as whether they enforce it.