Sufficient Scruples

Bioethics, healthcare policy, and related issues.

February 1, 2006

How the Worm Turns: The Ethics of Bodily Organ Sales

by @ 12:01 PM. Filed under Access to Healthcare, Autonomy, General, Global/Community Health, Healthcare Politics, Provider Roles, Reproductive Ethics, Sex, Women's Issues

Marin Gillis has an interesting article at the Women’s Bioethics Project, on payments to ovum donors for stem cell research or IVF. She worries that the anti-payment stance – intended to prevent economic exploitation of poor women – simply leads to another form of exploitation, in which women are subjected to other forms of pressure to donate and receive no reward at all.

If we put a price, any price, on bits of the human body, the worry is that in so doing we are saying that it is acceptable to treat some persons (the donors/vendors) in the same manner that all manufactured objects are treated. So fertile women who exchange ova for money would be treated like toasters and laundry detergent.

. . . [Ova] have the potential to be really good for other things, like helping people. Because of this, and the toaster concern, people claim that exchange of human tissue should be motivated by altruism and given in the form of a gift. Thus, embryos and fetal tissue, ova and sperm, (as well sex and surrogacy) may be given to others, for others, but only if the giver does not get paid for it. The exchange is this: a woman gives her ova freely and in exchange she get the satisfaction that she is helping the greater good. . . .

But these tissues are extremely valuable for other reasons besides the greater good. They are market commodities. Their value derives from what researchers and companies are willing to pay for the development of therapies, the potential profit to be made from the products derived from the tissue, and from the patents that that biotechnology companies and universities can obtain on these tissues. . . .

And here is my concern for the exploitation of women if they are not paid for ova: To be forced to give something away for free and not even to have a say as to where it goes when others make significant profit from it is to grossly exploit the giver. This for-profit part of the picture is missing from the current debate over ova donation.

(First, I have to say I have some definitional concerns here. For one thing, commodifying ova is not to treat donors in the manner of toasters or laundry detergent. Obviously, the ova themselves are the commodified product [Gillis notes they are "manufactured objects"]; the donors are thus in the position of being manufacturers and distributors of commodities, not commodities themselves – which is, of course, why they get paid. [You pay a manufacturer for a commodity; you don't pay a commodity for itself.] This may seem like a trivial nitpick, but, if we are to take the “commodity” analogy seriously – as indeed we should – the difference is huge, and its ethical significance is not negligible. It would obviously be abusive to treat women as commodities; it is not as obviously abusive to treat them as manufacturers or sellers of commodities, or at least we need to hear more about why it would be. And the identity of the “commodity” is itself significant – many conservatives of the “Every Egg is Sacred” bent object that it is inherently immoral to treat the precious, life-giving ova themselves as commodities, but to understand that objection we must, again, straighten out just what is being commodified and who is doing the commodification. In addition, it is not obvious to me why being forced to give up body parts for free when others make significant profit from it is exploitive; I think it would be exploitive even if there was not a question of profit involved. [For instance, it was exploitive for Dr. Hwang Woo-suk to coerce his female research staff into donating eggs for his cloning project, even though he was not making a financial profit off of it.] It is a greater exploitation, to be sure, not only to be pressured to donate but then to be cut out of whatever profits may be going, but the coerced donations in and of themselves must be our first ethical concern. However, these objections do not detract from the overall thrust of Gillis’s argument.)

What is interesting to me about this piece is the departure it presents from traditional thinking about paid-for tissue donations.

There was a longstanding practice, around the middle of the 20th Century, of paying donors for blood donations. It fell into disfavor in large part because of the bad quality of the blood that was collected (junkies and alcoholics would routinely sell their – often highly infectious – blood for money to get a fix, leading to rampant hepatitis epidemics in many large cities). An ethos of altruistic donation was erected around organ and tissue harvesting that quickly came to be seen as inherent to the ethics of donation. As Gillis notes:

[T]he idea of there being a market for ova, human embryos and fetal material is repugnant to many. This reaction is supported by a belief that there are certain kinds of things that should never be commodities or treated like commodities.

This attitude, however, merely parallels the attitude that prevailed for a long time – and to a large extent still today – regarding blood and transplantable-organ donations. In most countries today, including the US, it is illegal to pay for donations (though reimbursement of expenses is allowed). Preliminary suggestions have sometimes been floated that we should open a market in organs, in order to address the staggering mismatch between supply and demand in organ tranplantation, but have always been rejected. The danger of exploitation – of using financial inducements to pressure needy families into allowing invasions of their dignity that they do not really feel comfortable with – has always been seen as too great. The inducement to cut corners on quality or medical appropriateness, when an overt profit motive was introduced, was also seen as a danger (oddly enough, since the only persons currently not making a profit off organ donations – the donors – are the ones with no control over the use of the organs).

Interestingly, it has been in the field of assisted fertility that this concern was first evaded. There were controversies over paid surrogate motherhood, and some legislation prohibiting the practice, but payments for egg donations for IVF have been a standard part of that field for a long time now. Payment for egg donation for stem cell research is an identical practice in most respects. Sperm donations have always been reimbursed as well, though at a relatively low rate. It seems strange, given the country’s squeamishness over fertility and reproductive health, that this arena has seen almost no regulation of payment practices, and has given rise to actual, overt, direct payment for donation of bodily tissues, while bans on payment for non-reproductive organs or tissues remain in place, but there you have it.

Given the active, and relatively uncontroversial, market in gametes, we have now come to the position that not paying for these cells can be seen – for instance by Gillis – as exploitive, while at the same time the altruistic donation ethos prevails in non-reproductive-tissue donation, whereby payment is a form of exploitation.

I think Gillis’s position takes us all the way around a somewhat unexpected bend. (In saying this I do not say she’s wrong. I am concerned here only with the shift in perspective on this issue, not with endorsing one or the other position on it.) Where it was once an agreed tenet of ethics that payment for organ or tissue donation was inherently wrong – by introducing a profit motive into what should have been a question of personal ethics – it is now understood that payment is an inherent part of fair practice in at least some cases. In other words, the default position has shifted from no-payment to expected-payment, and what must be justified, against a charge of unethical practice, has shifted from financial inducement to refusal to share profits.

Aside from the overt question of payment – whether to or not – what has changed is our understanding of the profit motive in some aspects of healthcare. One of the objections to payment for tissue donations, I think, was not so much prudential (it leads to lower quality organs) or protective (it induces people to violate their own ethics) as it was one of professional obligation broadly understood. Prohibiting payment for organ donations by patients or families was part of the prohibition on self-interested decisionmaking in healthcare in general. Caregivers were expected not to allow questions of personal interest or profit to influence their patient care (even as they were immersed in a vast matrix of conflicts of interest and overt appeals to self interest). By extension, laypersons asked to make a donation were also expected not to allow questions of self-interest to influence their decision. Doing so in either case was to allow extraneous – and likely unethical – influences to enter the healthcare decisionmaking process, and thereby to distort decisionmaking about patient care. Doctors who prescribe treatments on the basis of their own profit expectations are unethical because their clinical decisionmaking is not determined only by patient good (i.e., because they have violated an obligation to act in the patient’s interest alone), and because this may have bad consequences for the patient (it is anti-utilitarian). Tissue donors who act out of self-interest similarly distort the tissue supply; they cannot be said to have violated a professional obligation, but they do contribute to a situation in which the availability of tissues depends on others’ need, rather than their willingness to contribute to quality patient care. (It may have other negative consequences as well: a tendency to fill the supply with organs from the most needy population groups, an inequitable distribution of pressure on the financially need for donations, etc.) The way to avoid making healthcare decisions – of any kind, whether by professional caregivers or by lay donors – on unethical grounds was to prohibit the offering of inducements to making unethical (i.e., self-interested rather than patient-interested) decisions. Of course, this policy also resulted in widespread shortages of transplant organs, but that was seen as the price paid for maintaining a particular ethical standard for healthcare across the board.

In arguing that it is exploitive to take bodily tissues without payment, Gillis is essentially endorsing profit-motivated decisionmaking in some aspects of healthcare. This position is not only a repudiation of the ethos of altruistic giving, it is an explicit (and quite explicit, in Gillis’s language of “commodities” and “sellers”) expectation that some decisions regarding patient care can ethically be made on the grounds of profit-seeking self-interest – that, indeed, it is unethical to ask donors to act other than from self-interest.

The issue is extremely complex, and predictions of outcomes very hard to make, on utilitarian grounds. It is at least contentious and confusing from a deontological approach. But I cannot help thinking that the rise of this perspective – if it is widely shared – is a significant watershed in bioethics. It touches on many questions of decisionmaker responsibility – including “conscience clauses” for pharmacists and clinicians, the duty to treat, the patient-centered care ethic, as well as on the provider-patient relationship and the locus of authority in decisionmaking. The appearance of the self-interested-actor ethos – evident more and more, with less and less embarrassment, in different parts of healthcare – should be given careful attention.

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