Here's a possible explanation for the conflicting information:
> There are effectively no "national standards" in the US for living donation procedures, including informed consent. I say "effectively" because there are Medicare standards in the 2007 Final Rule governing certification of Medicare-eligible transplant programs, but they aren't enforced. The UNOS Living Donation Committee has put together recommendations, but they also are simply recommendations. They are not enforceable--there is no consequence for not following the recommendations. With that said, anecdotal evidence suggests most if not all transplant centers inform the potential donor of the HLA matching level. In the 10+ years we've had a message board, I don't know of anyone who didn't know the HLA match. That doesn't mean there aren't people who didn't know. It's just in my unscientific experience, everyone seems to know, suggesting that the policy of most centers is to disclose. (Yes, I was informed.)
> The Health Insurance Portability and Accountability Act (HIPAA) contains restrictions on the ability to disclose personally identifiable health information. This is the law and it is enforced. I'm guessing that the person you talked to who said the "national standard" is not to disclose was referring to this law. Do you know if that's the case?
Even so, the disclosure of an HLA matching level isn't a disclosure of the potential recipient's health status. Also, personal health information can be shared when its used in the care of the patient, and it can also be shared with friends and family members unless the patient says otherwise. I'm not a lawyer, but it seems like HLA matching information would not be subject to HIPAA. But your friend may believe otherwise.
HIPAA notwithstanding, I would like to see full disclosure to a potential living donor of information that would help the donor understand the likelihood of success. I believe understanding whether the donation has a good chance of working or is an act of desperation would be useful to the donor in deciding whether to take on the risk to their own health. The information could include any behavioral issues (e.g., alcoholism of a potential liver recipient) or comorbidities (e.g., advanced heart disease) that could indirectly result failure or the recipient's death. There can be circumstances where the donor's right to know conflicts with the recipient's right to privacy. I'm admittedly biased, but I think the ethical answer favors the donor since they are the one who is taking on the additional risk.
I've seen several attempts over the years to get to a standard for informed consent--and a couple of suggested lists have been created--but there is absolutely no enforcement. Consequently, every transplant center has its own policies.
What's your position?