HEAL UoS

Posts Tagged ‘public consultations’

World first – UK Govt to back mitochondrial donation/replacement

In 2013, Genetics, Reproduction on June 28, 2013 at 7:50 am

The news this morning is again covering the mitochondrial donation/replacement debates, after Professor Dame Sally Davies, the Chief Medical Officer, announced yesterday that draft regulations will be published later in 2013 for public consultation, with the intention that the final version of the proposed regulations will be debated in Parliament in 2014.

These developments have been the subject of a number of consultations in the UK in recent years. The Government announcement focuses – understandably – on the HFEA’s consultations in 2011, on the safety and efficacy of the procedures, and in 2012, the public dialogue on the support or concerns held regarding the use of such procedures for ‘treatment cycles’ in humans (as opposed to research only, where the resulting embryos cannot be developed beyond 14 days due to restrictions on embryo research). However, the Human Genetics Commission first reported its conclusions in 2010 (HGC, since closed under the Arms’ Length Bodies Review of quangos); and in June 2012 the Nuffield Council on Bioethics published its report following public consultation.

In a shameless plug, in a recently published article Jones and
Holme consider some of the issues raised by mitochondrial donation/replacement. See further Jones and Holme,’Relatively (im) material: mtDNA and genetic relatedness in law and policy’, Life Sciences, Society and Policy 2013, 9:4, open access link: http://www.lsspjournal.com/content/pdf/2195-7819-9-4.pdf (alternatively, try http://www.lsspjournal.com/content/9/1/4).

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Jonathan Montgomery’s paper on ‘Public Ethics’ is published

In Public Ethics on January 11, 2013 at 5:32 pm

Jonathan Montgomery’s paper on the nature of ‘ public ethics’ has now been published in the Cambridge Quarterly of Health Care Ethics. Based on a presentation at a seminar on organ donation at the University of Keele, it reflects on the processes by which the Organ Donation Taskforce reached its conclusion not to propose a ‘presumed consent’ model for organ donation. It draws on the Jonathan’s experience as a member of that Taskforce and of other bodies charged with exploring ‘public ethics’, including the working party of the Nuffield Council on Bioethics on Public Health Ethics.

Jonathan argues that ‘public’ ethics is a much more contingent process than academic work and needs to (a) take into account contemporary policy debates, (b) be expressed in terms that are sufficiently close to the prevailing professional discourse to have a reasonable hope of reception, (c) assess how positions will be represented in the media and what behavioural changes will follow in the actual political context, (d) create workable compromise formulations, from which people can reason even if they reach them by different arguments.

Critiques of ‘public ethics’ need to take these features into account. He discusses the way in which a key concept in the Nuffield Council’s Public Health: Ethical Issues report, ‘stewardship’, has been examined and criticised by academics (including fellow HEAL member John Coggon in both his seminal book What Makes Health Public? and articles in the Journal of Medical Ethics and the Northern Ireland Legal Quarterly). Jonathan contends that the approach taken in the report is both explicable and defensible when seen as an exercise in public ethics, even though it may be more difficult to defend as an academic position. Criticism needs also to be sensitive to the fact that pronouncements on ‘public ethics’ are an exercise in persuasion whose audience is not academics. This may excuse the use of familiar but imperfect paradigms for analysis and a degree of compromise between committee members. It does not justify incoherent arguments.

Jonathan goes on to argue that there are some specific issues which present a greater challenge for ‘public ethics’ than for personal academic contributions. He suggests that greater attention must be paid to the difficulties for ‘public ethics’ of dealing with public opinion and seeks to explain how the Organ Donation Taskforce took into account public views it thought were based on flawed assumptions. He examines how bodies charged with considering ‘public ethics’ should address controversies where lay and professional understandings of what counts as evidence diverge. He also considers the implications of the contingencies of the socio-political contexts for ‘public ethics’ for analysis based on comparative work (both over time and between countries). This is a commonly used approach, but fraught with difficulties.

Nuffield Council on Bioethics celebrates 20 years

In 2012, Human tissue on January 17, 2012 at 12:05 pm

Yesterday a number of us received copies of a Report reviewing and celebrating 20 years of events and activities since the establishment of the Nuffield Council on Bioethics in 1991. The Report includes a foreward from the current Chair, Professor Albert Weale, who notes the increasing global life expectancy – since 1950 – from 46 years of age to 70 (80 in wealthier nations), and the bioethical questions provoked by increased well-being:  ‘In short, how can we lead lives, collectively as well as individually, that embody respect and justice given our growing understanding of health and life processes?’

Prof. Weale goes on to say:  ‘[T]he Council has sought to anticipate and not merely respond to public concerns, accepting that it will never have the last word but hoping sometimes to have the first. Its success has relied upon all those who have been on working parties, provided evidence and opinion in public consultations, worked for the Council secretariat or sat on the Council itself.‘ (emphasis added)

We are delighted to have been able to contribute to the public consultation that fed into one of its most recent reports, Human Bodies: donation for medicine and research – this was a revisitation of the issues around the use of human tissue/bodily materials in medicine and research, the subject of the Council’s second enquiry, which reported in 1995. HEAL, in its capacity as a consultation respondent, is cited on p88: ‘Whilst it might be right to try to meet ‘demand’ for renewable materials such as blood, the ‘demand’ for female egg donation in potentially limitless’. Further, both HEAL and the University of Southampton have strong links with the Council itself, as Professor Anneke Lucassen and Professor Hugh Perry are current Council members, and Dr Caroline Jones has recently provided evidence on legal and policy issues arising from mitochondrial DNA donation.

We wish the Nuffield Council on Bioethics a very successful future.