24 October 2011
ByAppeared in BioNews 630
It was the recommendations to pay for the funeral expenses of organ donors and to remove the cap on compensation for gamete donors that made the headlines. But it is not the specific recommendations of the Nuffield Council on Bioethics' report 'Human bodies: donation for medicine and research' that it will be remembered for.
What will remain in the memory is the way in which the Council went about its deliberations, which this review focuses on. It may be some time, therefore, before the true value of the report becomes apparent, but a few significant points are immediately worth comment.
First, the report seeks to establish a common framework or 'shared consensus' for policy makers within the wider and fragmented sphere of donation. The scope of the report is ambitious. It covers a wide range of human bodily material including blood and blood products, organs, tissue, gametes, embryos, fetal and embryonic stem cells and the living or whole body after death. Furthermore, it recognises the 'pluralism that characterises people's values, attitudes, beliefs and behaviours' in relation to the human body. But the report finds central ground upon which it establishes an overarching framework to implement policy. This is commendable.
Common to all is the crucial role played by the 'transaction' of donation and the 'intermediaries' involved, it says. This immediately dislocates the goal-orientated agenda of the state from the irreconcilable (moral) attitudes of individual people – allowing a common policy to take hold. If we focus not on the views of individuals, but the interests of society generally then certain conflicts or tensions in foundational ethics can be seemingly avoided.
Second, the report represents a descriptive analysis of the social, legal and political context of donation which makes it the latest authority in this area and very useful reading. It acknowledges that bodily material circulates within a global market place and recognises the pressure within the UK to meet often results in fertility clinics not being able to meet requests for IVF treatment. More specifically, the rate of egg donation has declined and the numbers of eggs available does not meet the demand from researchers and people seeking IVF.
Third, and perhaps significantly in years to come, is the Council's 'solution' to the above problem is framed in a symbiotic ethical framework between a state that actively promotes measures that improve general health, on one hand, and the notion of altruism as the basis for donation. This is advantageous in two ways. Its emphasis on the role of the 'state' allows for practical recommendations that bypass a potentially stifling ethical debate on the foundational ethical questions over the moral basis of donation, as above.
Further, by advocating 'altruism' as its favoured principle, the Council manages to a certain extent to avoid the problem of mutual exclusivity that other principles, such as autonomy, appear to attract. Yet it does not 'exclude' other approaches and invites principles such as welfare of the donor and the potential of harm and exploitation in 'non-altruistic focused' interventions, discussed below. Neither does its ethical framework become amoral. The Council affirms its previous position against the concept of purchase of bodily material.
Crucially though, the Council gives the framework some direction to determine in what ways it is ethically acceptable to 'encourage' individuals to donate their bodily material. It takes the standpoint that policies that aim to increase supply or reduce demand for blood and organs are justified by the broader context of public health. Thus its framework is goal-orientated, making for a workable overarching methodology – the details of which are discussed next.
Fourth, the language the Council adopts to determine the acceptability of public health policies provides clear and practical guidance to the healthcare professionals involved. It sets out an 'Intervention Ladder' – developed from an earlier report - where each 'rung' (six in total) takes the form of a type of intervention or 'input'. It surmises: 'The more intrusive and restrictive the policy on individual choice and liberty, the greater the justification required from the public health policy'.
The rungs range from actions which are seen as 'ethically straightforward', in the lower rungs, to those which are ethically more complex – rather than ethical or unethical, as such.
Rung 1: information about the need for donation
Rung 2: recognition for altruistic donation
Rung 3: removal of barriers and disincentives to donate
Rung 4: extra prompt or encouragement to donate
Rung 5: offering associated benefits in kind to encourage donation
Rung 6: offering financial incentives that leave the donor in a better financial position
The first four rungs are termed 'altruist focused' and the rungs five and six are said to be 'non-altruistic focused'. 'Non-altruistic focused' interventions must be closely scrutinised, it says, to ascertain whether it might be 'harmful'. Yet it emphasises that a departure from the altruistic model would be 'reckless' and could 'run the risk of irreversible damage to important communal virtues'.
Thus the report distinguishes between different types of donation – donating for research or donating for oneself or specified individuals – allowing for more restrictive approaches were necessary. In this two-tiered approach, the report acknowledges that there is something 'special' about donating ones' bodily material – be it an organ or gametes – and the value of this should be reflected in policies designed to promote donation to a burgeoning demand in healthcare and research. But likewise this may require greater justification for non-altruistic interventions.
For me, it is not only the specific recommendations and the broader ethical framework that strikes me as the most significant contribution the report makes in the area, but the simple point that it moves the debate over incentivising donation forward. In short, it provides a brave a pragmatic step forward and towards facilitation. The report reads very much as a 'tool' for healthcare professionals.
However, avoiding the central question of whether one is morally required to donate may be a fundamental weakness that may impede future progress.
This is important, as vast improvements can be made in bridging the gap between the initial decision to donate and the physical act of donation, whatever the reasons are to donate.
Furthermore, and to end on a cautionary note, an emphasis on procedure for donation could make it more difficult to formulate substantive criticisms of one's reason for donation. This may leave us without a mechanism to regulate the area.