Advocacy Informed Consent Living Donor Misinformation

The Subtleties of Informed Consent

The Bioethics Discussion Blog has a nice post on ‘nudging’ during Informed Consent (the post which was copied to the American Journal of  Bioethics website, which is where I picked it up):


The author’s example:

1)  “You may have the lump simply biopsied under local anesthesia with negligible risks from the procedure rather than surgically removed under general anesthesia with its known risks, and the results of the biopsy if negative for cancer would be correct over 99% of the time and missing the cancer less than 1% of the time, I would consider that an acceptable risk. After the biopsy, if negative for cancer, the lump will be continued to be observed”

2)”To have the lump biopsied there would be very little risk from the procedure and a less than 1% chance a cancer would be missed. However, you may have the lump fully removed but with the known risks from the general anesthesia and surgery.  If you want to be 100% certain regarding whether the lump is cancer or not, then we should excise, remove it.”


This sort of nudging happens in living donation too often. Research authors justify the ethical pitfalls of using minors (<18) as living kidney donors, and transplant center’s marketing and PR departments misrepresent research findings to further their department’s/hospital’s economic bottom line. (If you browse through this blog, I suspect you’ll find numerous examples of me criticizing, if not railing against, abstracts and/or conclusions that omit troubling findings). The result is that the public (and potential living kidney donors) are bombarded with messages that say living kidney donation is ‘safe’ or ‘minimal risk‘.


There’s an argument that the things I mentioned above aren’t important. It only matters what the transplant coordinator, advocate or surgeon disclose to the potential living donors during the evaluation period. The problem, of course, is that the ‘rules’ (as established by OPTN) are variable enough that it’s difficult to pinpoint what information is being disseminated.

And *how*. Let’s not forget ‘How’ as indicated by the original post.

From private discussions I’ve had with living donors, as well as multiple survey results, it’s clear that too many transplant professionals aren’t being as candid as they should be during the living donor evaluation process. Handing a patient a pile of papers isn’t enough. Neither is biased information.


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