HEAL UoS

Posts Tagged ‘egg donation’

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.

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.

Looking back five years: egg donation for research

In 2006, Reproduction on September 1, 2011 at 3:01 am

In September 2006 the Human Fertilisation and Embryology Authority launched a consultation, ‘Donating eggs for research: safeguarding donors’, asking whether or not egg donation for research purposes should be permissible, and if so, how could donors be best protected?

For a brief overview of the consultation, see this Bionews commentary: http://www.bionews.org.uk/page_12842.asp; and for a summary of the BMA’s Medical Ethics Committee’s views, see Veronica English’s follow up piece: http://www.bionews.org.uk/page_37900.asp.

In February 2007, the HFEA announced its decision to permit ‘altruistic’ donation for research purposes – see the Report.