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Archive for the ‘Genetics’ Category

(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

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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.

The Genetic Family in Question: Part II

In 2012, Genetics on June 18, 2012 at 8:17 am

This is the promised follow up to an earlier post  on the fascinating Interdisciplinary Dialogue event on ‘The genetic family in question’, held last month at the Morgan Centre, Manchester Uni. The morning session was devoted to two papers on ‘Being related: Blood, genes and gendered relationalities’; with Dr Janet Fink (Open University) speaking on ‘“Her husband will not come home until the little one is adopted”: marriage, adultery and the unsettling presence of the illegitimate child in post-war family lives’, and Dr Gill Haddow (University of Edinburgh) with ‘”We only did it because he asked us”: Gendered accounts of family participation in a population genetic data collection‘.

Janet’s talk was a fascinating foray into (now historical) practices around adoption following adulterous unions &  post-war family life, drawing on rich data from relevant charity archives (eg Moral Welfare Association, Salvation Army, Jewish Board of Guardians) as to the working policies in place at that time as to who ought to be helped (ie whose children could be placed for adoption) and who should not be assisted (depending on marital status, whether or not this was the first baby put up for adoption etc).

Gill’s talk provided some fascinating insights into her qualitative study with some of the participants of Generation Scotland – examining the recruitment strategies re encouraging familial participation in the study (in contrast with, eg UK Biobank, Generation Scotland recruits families for testing in order to explore inherited factors passed on within families). Gill explored gender differences in the reported accounts of the family members responsible for recruiting others (eg trends in who they tended to recruit), strategies of recruitment and reasons for participation (eg reciprocity, a means of a family member having a health ‘mini-MOT’ without realising); and also reflected on the limitations re recruitment in light of the realities of family life ~ eg lack of close kinship ties, falling out ~ which clearly impacts on which family members are asked, and which will participate.

Their abstracts and slides, together with those in the session on mtDNA, are now available here.

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.

 

Final Report from Human Genetics Commission

In 2012, Genetics on June 1, 2012 at 8:00 am

The Human Genetics Commission has published its final report, report summarising its work and achievements since its creation in 1999.

In his introduction to the report, HEAL member Jonathan  Montgomery, who chaired the Commission from 2009-2012, notes that the Commission’s work has led to policy and legislative changes, and the principles that have underpinned its reports have established a framework for responding to the possibilities that our enhanced scientific knowledge is creating.

‘Just as significant has been the approach the HGC has pioneered of open and transparent deliberation. It has combined rigorous thinking with listening carefully to people’s views, facilitating public debate, and using different media for the exploration of matters within its remit. Its success has been built on the high quality of its Members, the advice of its Consultative Panel, and the many contributions received from those who have engaged with its consultations and other work. It has also been blessed with an excellent Secretariat, without which it would have floundered.’

The report summarises the work and achievements of the HGC over the twelve years of its existence. The first chair Baroness Helena Kennedy writes ‘The creation of the HGC in 1999 was a courageous move, and a concrete indication by the Government that it hoped to encourage a debate about how we as a society should deal with important aspects of human genetics. Many of these aspects were of a profound philosophical nature, taking us to the heart of our idea of ourselves as humans, while other aspects were more practical.’

Professor Sir John Sulston, Acting Chair of the Commission 2008-9, drew attention to the conclusion of  the independent review of the HGC undertaken in 2008 that the HGC consistently ‘punched above its weight in terms of influencing public policy’, and commented that ‘there is no doubt that the HGC represented exceptional value for money. It demonstrated that it could respond quickly to changing agendas and specific requests for advice from Ministers, providing careful evaluation of emerging technology.

This latter role will now be taken up by the new Emerging Science and Bioethics Advisory Committee (ESBAC) under the chairmanship of Sir Alisdair Breckenridge.

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.

Donor conception: interesting times

In 2012, Genetics, News, Reproduction on April 10, 2012 at 10:26 am

In the late 1990s the wisdom of choosing sperm donation/donor conception as the focus of my research was something that I was questioned about more than once. It was seen as a ‘dated’ subject; after all it wasn’t about the latest technological developments or indicative of where science or policy might go next. But, those concerns fell by the wayside in the early 2000s when this field hit centre stage once again, and it shows no signs of letting up a decade or so later. A cursory glance at the news in the last week or so gives rise to a range of stories:

  • From the ‘world first’ recommendation, in Australia, from the Victorian Parliament’s Law Reform Committee that all donor conceived people should have access to donor information, and where needed anonymity should be revoked retrospectively; further commentary and links are available on Bionews.

 

  • ‘Children of sperm donors should be told’ read one headline in The Independent (02 April, 2012; ie they should be informed about the mode of their conception – it does not seem that those interviewed were asked questions about the donor’s identity per se). 

 

  • The Nuffield Council on Bioethics is seeking written submissions of evidence by 15 May 2012 on ‘information disclosure’.

 

 

  • And last, but not least, ‘British sperm donor “fathered 600 children” was the lead headline for the Sunday Times (08 April, 2012); on 10 April 2012 this was ranked the ‘most read’ article in The Sunday Times on-line. This story later appeared in The Telegraph: ‘British man “fathered 600 children” at own fertility clinic’.  

Sometimes the ‘old’ questions or supposedly ‘settled’ issues give rise to the most interesting conundrums, in health care policy and law and beyond.

Donor matching: (not) in the red?

In 2011, Genetics, Reproduction on September 27, 2011 at 10:39 am

News broke last week that red-haired sperm donors were being turned away by Cryos, a Danish sperm bank, due to their currently high ‘stock levels’ and lower demand than for donors with other characteristics. The Telegraph quoted Cryos’ director, Oleu Schou, as stating that Ireland provided ‘the only reliable demand’ for red-haired donors. In contrast, an article in the Irish Times indicated that Mr Schou had stated that Ireland was actually in the top 3 of countries with the highest demand for red-haired donors, placed behind Denmark and Germany.

But, irrespective of whether or not Ireland is the place in Europe where red-haired donors are especially in demand, the story draws attention to a long-established approach to donor conception; that is, ‘donor matching’, where the characteristics of donors are (often, but  not always) matched to the characteristics of the intending parent(s). Whilst there are no guarantees that using the gametes from a donor with similar characteristics will necessarily result in a child that will physically ‘match’ the intending parent(s), which clinics should discuss with patients; difficulties can arise where gamete donors with the desired characteristics cannot be found – the example given in the Telegraph article is of the scarcity of Indian sperm donors.

While the practice of donor matching began in the context of the provision of donor sperm to married couples, in order that they might pass as ‘the family’ at a time where secrecy and anonymity in this field were both promoted, the desirability of donor matching is not restricted to those in heterosexual relationships – Caroline Jones has previously explored the significance of implied cultural and racial bio-genetic links in families with two mothers, drawing on small scale empricial research – see Sexualities (2005) Vol.8(2): 221-237.

 

Other Links

http://www.telegraph.co.uk/news/worldnews/europe/denmark/8768598/Sperm-bank-turns-down-redheads.html

http://www.bionews.org.uk/page_107061.asp

http://www.parentpages.co.uk/family-2/families/no-sex-please-were-danish linking to: http://www.dailymail.co.uk/news/article-2038499/Sperm-bank-Cryos-turns-redheads-No-sex-Danish.html

Reprieve for UK Donor Link

In Genetics, News, Reproduction on September 23, 2011 at 8:00 am

UK Donor Link, the voluntary contact register set up for persons conceived with donor gametes, and those who had donated gametes pre-August 1991, faced closure due to a lack of funding, but this month was granted a temporary reprieve by the Government. It is now secure to continue its work until March 2012, and further funding options will be explored in the interim period. 

UK Donor Link was established in 2004 to enable donor conceived individuals, and gamete donors, and half-siblings, to exchange information and – where parties wish to – to have contact with one another. This is only for adults, who were conceived or who donated gametes pre August 1991 (when the HFE Authority was established under the auspices of the Human Fertilisation and Embryology Act 1990).

The potential impact of the closure of UK Donor Link was highlighted by the screening of the BBC documentary ‘Donor Mum: the children I’ve never met’ (30 August) – as at a crucial time of increased public awareness of their activities, due to the lack of funding they could not accept any new registrations following the programme, leaving donors and donor conceived persons without a formal avenue to exchange information and/or to contact each other, where desired. Fortunately registrations were re-opened on 15 September 2011, but the future of the organisation arguably remains fragile until a more permanent basis of funding can be established.