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Living Donor Misinformation

The Myth of the Happy Living Donor

I was recently reading the AMA’s Council on Ethical and Judicial Affair’s statement on nonsimultaneous living kidney donation (aka kidney pairs, swaps and chains, especially those that occur over a period of time). At one point, it said:

Benefits may include rewarding feelings of helping another, of empowerment, or of increased self-esteem

The thing about documents like this and statements like that is that the authors are required to back it up. So I consult the reference and it is – shock – another paper by the CEJA, this one regarding living organ donation in general:

Council on Ethical and Judicial Affairs. Transplantation of Organs from Living Donors. Available at http://www.ama-assn.org/ama1/pub/upload/mm/code-medical-ethics/215a.pdf

While referencing yourself isn’t strictly prohibited, it’s not considered the best form of academic scholarship either.

Here’s that sentence again:

Psychological benefits may include rewarding feelings of helping another, of empowerment, or of increased self-esteem

it goes on to say:

sense of closeness to the recipient, family, and the community; and satisfaction from having contributed to a valuable cause. Some of these benefits, however, may be contingent on factors associated with the donor’s experience, including the donor’s attitude toward donation and how the recipient fares. Donors also can experience feelings of resentment, guilt, profound grief, or depression subsequent to the procedure.

Which is where the closest reference lies.

Wright L, Daar AS, “Ethical aspects of living donor kidney transplantation and recipient adherence to treatment,” Prog. Transplant. 2003; 13(2): 105-9.

From the abstract:

In order for the benefit of living donor kidney transplantation to outweigh the risk, evidence that the proposed recipient will care for the transplanted organ must exist. Nonadherence to treatment has been identified as a major risk factor for graft rejection. When nonadherence to treatment regimens leads to loss of the graft, the consequences are felt by the recipient, donor, and the treatment team.

Notice this says nothing about there being psychological benefits to the living donor if the transplant succeeds, only noting the emotional loss if the graft fails. It doesn’t produce the origin of the original statement. Granted, I don’t have the full article in front of me (and can’t see to obtain it, so if someone has it, please email me), but the focus is very clear – does the recipient’s outcome adversely affect the living donor? And the answer is yes.

I use this as an illustration of source/fact regurgitation. Sometimes (and this isn’t relegated to academic literature) a statement is repeated enough that it becomes accepted as truth, regardless of its real veracity. Too often, it’s the result of an old study recited again and again and again and again.

For example.

Today I pulled up a U of Minnesota article from 1999 regarding a living donor’s quality of life after donation. At one point, it states:

Moreover, benefits for living donors have been documented as well, including an extensive medical work-up that not infrequently identifies occult medical problems, a boost in self-esteem, and an increased sense of wellbeing.

The cited sources are from 1977 and 1982, respectively.

Am I (or any other reader) supposed to believe that two twenty-year-old studies are all the authors could dig up? This leads me to believe that either these results have never been duplicated since 1982, which is a bad sign for the validity of the statement; the authors were too lazy to find something more recent, which doesn’t reflect well on them or; everything published since 1982 counters the authors’ contention.

So which is it? I have no idea. But considering some recent correspondence I received from an expert in his field which cautioned against using utilizing ‘old’ paradigms in treating bereavement, I’m quite confident this sort of thing isn’t considered the highest in research standards.

Herein lies part of the problem with mainstream media picking up information from a press release on a published study. Most often they never read the source material itself. And if they do, they don’t have the content to critically think about what they’re reading, or spend the time to track back the sources. If they did, we might have discovered that guy’s autism-linked-with-vaccines study was a fraud long before now.

Johnson EM, Anderson JK, Jacobs C, Suh G, Humar A, Suhr BD, Kerr SR, & Matas AJ (1999). Long-term follow-up of living kidney donors: quality of life after donation. Transplantation, 67 (5), 717-21 PMID: 10096528

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