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Ethical Considerations Informed Consent Living Donor Research

Spital’s warped definition of Informed Consent

I hardly even know where to begin with Aaron Spital, MD. He is so pro-living donation that he concocts justifications for opinions not based on fact or logic, and refuses to acknowledge that living donors are vulnerable human beings with the same rights as the sick recipient and the almighty surgeon.

In his 2001 article, he addresses Informed Consent (not necessary) and the Right to Donate (doesn’t exist; a surgeon’s rights come first).

“Sometimes even competent people make rash decisions or are pressured in ways that constrain their autonomy and thereby render their consent invalid.”

“One concern about living organ donation is that some “volunteers” may offer to donate not because they really want to but because they feel they must. Such feelings could result from pressure exerted by other people, but this is unusual.”

Instead of screaming “how the hell do you know?” I’m going to give Spital the benefit of the doubt since his references are from 1986 and 1987 and frankly, no one knew jack squat about the living donor experience then (they don’t know much more now, but at least some of us are speaking out about it).

“Of greater concern is the effect of pressure that arises from within out of a sense of duty or guilt. Because potential donors are almost always emotionally (and usually genetically) related to their recipients, many of them feel obligated to donate and that they have no real choice.”

Good start, yet…

“But rejecting volunteers for this reason [lack of informed consent] makes sense only if informed consent is the sole medium through which a potential donor can express his autonomy. In my opinion, it is not.”

“Consent that is not fully informed may still be valid if it expresses a competent person’s free choice.”

Funny, I don’t recall reading that in the Nuremburg Guidelines, the Belmont Report, the Amsterdam Forum on the Living Donor, the Vancouver Conference (I could go on here)… In fact, around the same time as this editorial was published, U of Penn was denounced for the death of a ‘willing’ research subject in a gene therapy trial, so I’d say that makes Dr. Spital’s point particularly moot.

“And for many living related donors, a detailed understanding of the donation process may be much less important to them than the welfare of the recipient.”

“informed consent is based on an impartialist understanding of the requirements of autonomy that deemphasizes personal relationships . . . In living related donation, however, partiality and personal relationships frequently play essential roles because personal relationships importantly influence or even constitute potential donors’ personal goals” (actually quoted from one of his references, Majeske, which Spital quotes)

Spital (and Majeske) are right; a related living donor’s goal is to help their loved ones. Living donation is the means by which they attempt to reach this goal. However, at no point does this negate or replace the importance of informed consent, as Spital claims. He focuses on parent to child transplants to illustrate his point, a purposely emotional and disingenuous choice because in 1988 the majority of living donations were sibling to sibling, double the number of parent to child (a ratio which remained as of 2008).

“it is likely that many parents considering donating a kidney to their child do not fully understand the risks involved. Nevertheless, from their perspective, all the information needed to make a good decision may be immediately available. That is, that kidney donation is an accepted and effective practice, that their child is very ill, and that they can help by donating a kidney. Additional data may seem unimportant to them, as parents are often willing to do whatever is necessary to save their beloved son or daughter”

Spital, like many pro-living donation advocates, assumes that every transplant is successful and every recipient regains his/her health for the long-term. His myopia neglects to recognize the living donor who has to live with the ramifications of a negative outcome, and more importantly, the responsibility the transplant industry has toward them.

Second, he’s also assuming that ‘accepted and effective’ constitutes ‘safe’. What he conveniently overlooks is that the living donor presents themselves to the surgeon and the transplant center with complete, blind trust, beliving they will put the living donor’s needs first, take care of and not harm them. Yet Housawi (2007) and UNOS own lax policies (and nonexistent enforcement of them) proves this not to be the case. If the medical community isn’t adhering to their own ethical standards, and not practicing due diligence, then Spital’s suggestion to replace informed consent with an ‘ethic of care’ is more than unacceptable; it’s neglectful and abhorrent.

Spital sums up his proponence of ‘care as consent’ with the following:

“The observation that the vast majority of kidney donors are glad they donated and would do it again supports this position”

Is “I’d do it all over again” a valid measure of a positive experience, or is it an emotionally charged catch-22? As Spital stated, the majority of living donors are related to their recipients. This was especially true in 2001, as well as the mid-80s when his references were published. By his own account, these living donors were guided by their personal moral framework, not by a careful consideration of risks. Consequently, the answer to this loaded query will also be based on emotion. To ask, “Do your regret donating, would you do it again?” is to ask if one regrets caring about someone close to them, if one would choose to love just a little less the next time around. Who would answer that question in the negative, especially to a bunch of nosey academics? And just who thought it would be a good idea to ask it in the first place? Clearly, only someone who’d never had to ask or answer it themselves.

SPITAL, A. (2001). Ethical issues in living organ donation: Donor autonomy and beyond American Journal of Kidney Diseases, 38 (1), 189-195 DOI: 10.1053/ajkd.2001.25213

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