Conference Report: Consent and Organ Donation Seminar, Keele

Guest post by Sorcha Uí Chonnachtaigh

On Thursday, 9 December, the Centre for Professional Ethics at Keele hosted a Wellcome funded seminar entitled “Consent and Organ Donation” to coincide with the final lecture in a series on organ donation by visiting Leverhulme Professor Martin Wilkinson.

Martin’s lecture on Wednesday evening (8 December), “Reforms for the UK? ‘Presumed Consent’ and Organ Sales”, provided an excellent starting point for our discussions on consent the following day.  Martin criticised two possible policy responses to the scarcity of organs for donation: moving to a “presumed consent” (or opt-out) system and a state regulated system of paid donations.  The latter does not appear to be of direct relevance for consent but both proposals have been made in response to the de facto “family veto” (about which Martin has written elsewhere).

Martin’s objections to the “presumed consent” proposal mostly focused on two empirical issues.  First, where presumed consent systems appear to have been successful, it is not presumed consent alone that accounts for an increase in organ donation (Spain is a good example of this).  Secondly, even ‘presumed consent’ or opt-out systems do not operate on a genuinely (or fully) presumed consent (or opt-out) basis because in both opt-in and opt-out systems, consent of the donor can be over-ridden by the family.

Martin endorsed a paid donation system.  It would be inappropriate to say that he is in favor of organ sales because the policy he endorses is a state monopsony whereby the focus on purchase and the “payment” need not be cash but might consist in any number of incentives, such as funeral costs for the deceased or vouchers.  The single-buyer market would be far from a free market – organs would have a set “price” (or value) and the buyer (the NHS) would be obliged to provide pre- and post-operative care, the latter of which would obviously only apply to living donors.  Martin responded to various objections to “paid donations” including those related to commodification, dignity, the importance of the “gift” relationship, altruism, coercion and consent.  The lecture provoked interesting questions both from the academic delegates and lay attendees.  It gave us all food for thought in advance of the Consent and Organ Donation seminar the following day.

The seminar had three themed panels: organ donation policy and practice; the philosophy of consent and tales from other jurisdictions.  The first panel consisted of three speakers with extensive policy experience: David Price (De Montfort), Jonathan Montgomery (Southampton) and Jean McHale (Birmingham).  David gave a very interesting presentation on the legal and ethical policy issues arising from the treatment of prospective donors.  The indications given by many policy institutions is that certain treatment decisions would be considered problematic if they prioritise organ retrieval over “best interests” of the patient.  David outlined some of the problems with this position.

Jonathan Montgomery’s presentation on the compromises required for consensus in policy-making was particularly topical.  Jonathan focused on his experience on the Organ Donation Task Force and their considerations of an opt-out system and on the Nuffield Council on Bioethics working group, which produced Public Health: Ethical Issues.  It was interesting to look at the tensions arising from public opinion (following deliberative engagement), political context, empirical evidence and the expert membership of policy committees.  Jonathan also spoke about framing in policy, in particular about the increase in public willingness to donate organs when asked if they would like to receive an organ in contrast with traditional questions about willingness to donate to others.

Jean McHale spoke about policy responses to organ transplant tourism (“EasyJet transplants”), specifically focusing on how the criminal law might address breaches of domestic law abroad.  Here there is an issue of consistency in the law and Jean drew on some interesting analogies with blackmail, extortion and murder that occur extraterritorially.  She made a self-described controversial claim that the law, for consistency’s sake, might want to impose sanctions on those who go abroad for transplants with regard to provision of post-operative care. A number of questions from the floor touched on the most significant aspects of the paper.  First, would sanctions only apply to those who need treatment for complications (and not those who have successful transplants), and what implications would this have for consistency in the law?  What is the basis of imposing sanctions: the notion that any harms arising are self-imposed or the perceived ethical issues (e.g. exploitation) associated with organ donation in some countries?  Depending on these kinds of details, we might have very different responses to Jean’s proposal.   A very provocative paper indeed…

In the second session on philosophic of consent, Janet Radcliffe Richards explored the notion of having rights over our dead bodies and the role of law in changing cultural attitudes.  Neil Manson critiqued Ben Saunders’s recent concept of “normative consent”.  Saunders argues that we should have an opt-out system and for those who do not opt-out but whose wishes are unknown we should retrieve their organs.  Because it is the right thing to donate, we should assume that people would.  Neil’s analysis rightly dismissed the weak objections, such as the claim that such an approach constitutes organ conscription or is a manifestation of a totalitarian approach to organ donation.  Both objections fail to recognise that Saunders protects refusals (decisions to opt-out) for any reason (even those that are irrational or invalid from a normative perspective).  Neil’s major criticism rests on the distinction between consent as agreement and consent as permission, where consent as agreement is the undertaking of obligations  and consent as permission is the waiving of obligations.  Consent has a second order liberty right, whereby the consenter is free of obligation and free to consent or refuse.  Consent, Neil says, is a two-step process involving the undertaking of obligations.  The normative claims as Saunders outlines them involve direct substantive obligations, in which case consent plays no role. Hence, Neil concludes, normative consent is not consent at all.  There were some interesting questions about triggering rights as opposed to claiming rights with consent having a second order liberty right.

The final panel with the theme “tales from other jurisdictions” consisted of Govert den Hartogh (from the Netherlands) and Martin Wilkinson (visiting Keele from New Zealand).  Both speakers used the theme very liberally to allow them discuss issues in organ donation that interest them.  Their loose interpretation of the theme was to our benefit.  Govert discussed the Volenti principle – in particular, the issue of consent as a sufficient justification for the removal of living organs.  This raised interesting questions about indirect paternalism, however I missed some of Govert’s paper and must wait for the publication of it to really explore this further.  Let’s hope the wait is not too long.

Martin Wilkinson once again had an evening slot but kept discussion lively.   Martin argued for an impartially defensible method for acquiring and allocating organs, using the case of the “racist donor” (in which the deceased donor of her family give consent for donation with conditions).  In such cases, it is often argued that we can only operate a system of donation with an impartial principle of allocation, that anything less is indefensible.  Martin made the argument that if we refuse to accept organs with conditions attached (such as exclusion of recipients of particular skin colours), we will have lose organs.  Martin also argues that we don’t discourage partiality in organ donation that partiality may not be something we wish to discourage at all given that partial motivations for living intra-familial donations which introduce organs into the system that otherwise would not be available at all.

One recurring issue was the role of the family in consenting to organ retrieval for donation purposes.  This wasn’t explicitly addressed though it was mentioned in Martin’s Leverhulme lecture and in both David’s and Jonathan’s presentations. I imagine it will continue to be a significant issue in discussions around organ donation and consent.

Congratulations to my colleagues who organised the seminar, particularly Sheelagh McGuinness, and thanks to the Wellcome Trust for supporting the event.

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