HEAL UoS

Posts Tagged ‘mitochondrial donation’

(More) HEAL teaching outside the Law School

In 2014, Genetics, Gratuitous self-promotion, Reproduction, Teaching on March 24, 2014 at 8:31 am

Following on from John’s post last week, about teaching on the MSc in Public Health Nutrition, I recently led a session on ‘identity’ for the CIP module Ethics in a Complex World. The module is led by Dr Julie Wintrup and therefore ‘housed’ in Health Sciences. But, it draws in (a lot of) contributions from the Law School, not least from our current Head of School, Professor Hazel Biggs, who co-led a number of the initial large-group sessions this semester, alongside Professor Roger Ingham (Psychology), and Dr Angela Fenwick (Medicine). Both John Coggon and A.M. Viens will also be making cameo appearances later this semester.

As the list of names and disciplines in the preceding paragraph suggests, this is a truly inter-disciplinary module. For the teaching team this demands some reflection on ‘our’ respective disciplinary boundaries and assumptions – not only in setting up the overarching aims and objectives, but down to the detail of selecting the ‘what and how’ of discrete sessions/topics, and indeed the assessment(s). In turn, the diverse student body bring their own disciplinary, and other, assumptions, life experience and questions to the table, both in the large and small group sessions – raising some excellent questions for further engagement, analysis and reflection. The other colleagues can be quite challenging with their questions too, which can only be a good thing! Further, the team actively engages with social media throughout the course, and as I was speaking Fiona was ‘Scoop’ing, and Julie tweeting.

I was part of the core group that set up this module, but had to step aside this year due to other commitments, so it was a real pleasure to return for a ‘guest’ spot, and to (re-)consider donor conception, mitochondrial donation and identity matters (after thinking about hidden law-making for a fair while – more news on that project to follow in a future post). As John made clear last week, these types of sessions are not about ‘instructing’ people as to the ‘correct’ answers to ethical issues, but rather to provoke reflection.

Certainly, in terms of academic study, legal developments and policy-making, interest in donor conception has waxed and waned over the decades. We seem to be in a ‘waxing’ phase, inasmuch as this area was the subject of a dedicated NCOB Working Party and Report in 2013, and is linked to the debates around mitochondrial donation, including a 2012 NCOB Report and the current DH consultation on the Draft Regulations on mitochondrial donation (i.e., how should we treat egg/mitochondria donors in this context?). I was privileged to be asked to give evidence on the regulatory aspects of donation to the former Working Party, and to have my research referenced within its Report (fn 112, 397); further, being involved in an evidence session for the latter Working Party, and being invited to comment on the draft Report.

But, no matter what can be said about the academic treadmill – whether for the good, the bad, or with indifference – it is still the greatest privilege to introduce people to new areas and/or ideas, and ask them to have a re-think about their assumptions, and in doing so to continue to challenge your own thought processes and rationale(s).

Caroline Jones

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).

HFEA consultation on mitochondrial replacement

In 2012, Genetics, Reproduction on December 14, 2012 at 4:12 pm

The HFEA’s consultation on mitochondrial replacement was launched in September 2012, to consider the social and ethical issues arising from these techniques. The Oversight Group’s terms of reference can be found here, and the members are listed here. HEAL responded to the consultation (which closed last week). Our full response can be read here: HFEA mtDNA 2012 HEAL consultation response.

Our closing remarks cautioned that:
“Assuming either technique is to be permitted for human use it is vital that appropriate follow-up studies should be undertaken (and financial resources made available to support the research) to measure the levels of both short and long-term risks, not only to the offspring, but where relevant, to future generations, following mitochondrial replacement. Without such research there will be insufficient data for prospective patients to assess the levels of potential risk vs their desire for a child that is genetically related to them.”

We look forward to reading the outcome of the consultation in 2013. Previous blog posts on this area can be found here, here and (more tangentially) here.

DH Consultation on the futures of the HFEA and HTA

In 2012, Reproduction on July 2, 2012 at 9:00 am

The Department of Health launched today a consultation on the future of two key regulators, the Human Fertilisation and Embryology Authority and the Human Tissue Authority as part of the Coalition Government’s plan to cut the number of arm’s-length bodies and reduce bureaucracy announced in Liberating the NHS: Report of the arm’s-length bodies review (2010). The Public Bodies Act 2011 provided powers to transfer the functions of the HFEA and HTAto other bodies, but not to abolish them. Substantive change to the terms of the regulatory framework would require further legislation. The consultation runs until 28 September.

The logic of streamlining is that providers of health care are subjected to overlapping licensing/registration and inspectorate regimes that might be better co-ordinated, or possibly integrated into a single scheme of regulation under the umbrella of the Care Quality Commission (as in the preferred option). One test of this will be public confidence in the CQC, which has been criticised by the Public Accounts Committee and  seems likely to receive further adverse scrutiny in the report of the Mid Staffordshire NHS Foundation Trust Public Inquiry in the Autumn.

The research approval functions in relation to embryo research may no longer need to be separated out from the wider system of research ethics committees, supported by the Health Research Authority, as under the Human Tissue Act 2004 where the HTA licenses tissue storage but specific projects are approved by RECs. The preferred option in the consultation adopts this approach.

The consultation does not address the policy making functions of the two authorities. One important historical role of the HFEA has been to develop principled approaches to difficult ethical issues raised by assisted reproductive technologies. Work under way includes a national donation strategy, chaired by Professor Sheila Maclean, and work on public consultation on the use of techniques to prevent mitochondrial disease. It is not clear where such deliberative engagement and policy work will fit into the new regulatory landscape. Parliamentarians have expressed concern over the ‘democratic deficit’ in leaving such considerations to non-elected groups but this consultation document does not set out the thinking on the best way to resolve them in the future.

Jonathan Montgomery is Chair of the Health Research Authority but the views expressed here are personal only.

Nuffield Council on Bioethics’ Report on Mitochondrial donation: a brief precis

In 2012, Genetics, Reproduction on June 12, 2012 at 1:16 pm

Today sees publication of the Nuffield Council on Bioethics’ Report on mitochondrial donation, entitled ‘Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review’, available here. An executive summary is also provided. As a very brief precis, taken from the executive summary, the NCOB Working Party has concluded that

  • Due to the health and social benefits to individuals and families of living free from mitochondrial disorders, and where potential parents express a preference to have genetically-related children, on balance we believe that if these novel techniques are adequately proven to be acceptably safe and effective as treatments, it would be ethical for families to use them, if they wish to do so and have been offered an appropriate level of information and support

 

  • Given the above and subject to the appropriate oversight, we believe that as a research objective it is ethical to gather further information about pronuclear transfer and maternal spindle transfer in order that they can be considered for treatment use.

The Working Party was also clear that use of mitochondrial donation ‘does not indicate, either biologically or legally, any notion of the child having either a ‘third parent‘, or ‘second mother‘; nor should mitochondrial donors have the same status as gamete donors (ie not to be mandatorily identifiable); and that long-term follow-ups of children born following (future) use of such techniques should be committed to by families, and supported by the creation of a centrally-funded register of these procedures, available to researchers.

 

mtDNA in Manchester: Exploring mitochondrial donation

In 2012, Genetics, Reproduction on May 16, 2012 at 8:23 am

Last week I participated in a fascinating Interdisciplinary Dialogue event around ‘The genetic family in question’ at the Morgan Centre for the Study of Relationships and Personal Life at Manchester University, organised by Dr Petra Nordqvist. This was linked to her project with Prof. Carol Smart on ‘Relative Strangers’ (the subject of last week’s blog post).

Coincidentally, both Dr Rebecca Dimond (Cardiff) and I offered papers on mitochondrial donation, so we were fortunate to have an entire afternoon session dedicated to considering the policy, law, social and other potential implications raised by these developing techniques – these are currently lawful for research purposes only (ie not lawful for use in the treatment of patients), following a licensing decision by the HFEA in 2005. Rebecca talked us through some insightful aspects of her interviews with family members with mitochondrial conditions, whereas my focus lay with the law and policy issues that may arise if Regulations are introduced to make lawful the use of these techniques in treatment. This area is, of course, subject to considerable attention in 2012 with the Nuffield Council on Bioethics due to publish its Report soon, and the HFEA in conjunction with Sciencewise-ERC due to undertake public dialogue later this year.

Our abstracts are below … a further post will follow on the morning’s session soon.

Relatively (im)material? mtDNA and genetic relatedness in legal discourse – Dr Caroline Jones

Mitochondrial donation poses the latest regulatory challenge for policy-makers in the context of assisted conception. In 2012 the Nuffield Council on Bioethics and the Human Fertilisation and Embryology Authority are consulting on ethical issues raised by this technique; including the potential relationships created by the use of three parties’ genetic material and the associated ramifications (eg whether or not there is a need to establish records of such donations and, if so, to whom should information be provided?) Hence, this technique poses both novel and familiar questions about ‘the genetic family’. This paper will explore the construction of the relative (in)significance of mitochondrial DNA in recent parliamentary debates, and current policy and consultation documents, in order to reflect on the ways in which the role of genetic connections – or lack thereof – are mediated in legal discourse and policy formation.

Who is the ‘third parent’? Mitochondria donation and implications for identity and kinship – Dr Rebecca Dimond

What is the link between mitochondrial DNA and a person’s identity?  What relationship does a woman have to a child conceived using her donated mitochondria?  These are key questions that the Nuffield Council on Bioethics have asked in exploring the ethical issues surrounding emerging techniques to prevent inherited mitochondrial disorders. There is currently no cure for mitochondrial disease but experimental reproductive technologies have now been developed which can allow women with mitochondrial disease to have children free from the disease. The technique involves replacing faulty mitochondria during an IVF cycle with healthy mitochondria from a donated egg. As the donated mitochondria (which contain a small number of genes) would be inherited by future generations, this technique requires a change in the law in order for it to be offered to patients and this has prompted calls for evidence by the Nuffield Council and HFEA. By drawing on interviews with patients with mitochondrial disease and media representations of the ‘three parent embryo’, in this presentation I consider how these techniques raise fundamental questions of identity and kinship.