HFEA Consultation: Medical Frontiers

HFEA

Name of participant: Dr Marilyn Crawshaw, PROGAR.

These are the recorded submissions for Session 1. Only sections to which responses have been recorded are listed below.

Permissibility of new techniques

Q1: Having read the information on this website about the two mitochondria replacement techniques – maternal spindle transfer and pro-nuclear transfer, what are your views on offering (one or both of) these techniques to people at risk of passing on mitochondrial disease to their child? You may wish to address the two techniques separately.
Your response:

We do not offer an organizational response to this question as we believe that to formulate such a response falls outside of our remit.

Changing the germ line

Q2: Do you think there are social and ethical implications to changing the germ line in the way the techniques do? If so, what are they?
Your response:

We do not offer an organizational response to this question as we believe that to formulate such a response falls outside of our remit.

Implications for identity

Q3: Considering the possible impact of mitochondria replacement on a person’s sense of identity, do you think there are social and ethical implications? If so, what are they?
Your response:

Our interest in the lifelong implications of assisted reproduction techniques for child & family welfare informs our belief that the identity of individuals conceived through such techniques is affected not only by the transmission of genes from genetic parents or the involvement of individuals directly involved in gestation (e.g. gestational surrogates; ‘social parents’ using embryo or double donation) but also by the meaning such origins holds for them as well as a wealth of subsequent influences, incl. social environment. The combination of influences on the formation & maintenance of identity varies from individual to individual & can assume differing significance to it over time.

To deny the significance of any party or part in the process whereby someone is conceived, carried, born & then develops further is dangerous. The history of donor conception should not be repeated. Donor offspring have fought hard to establish the importance of openness within their families & the legal right to full information about their personal biographies, incl. the identity of their donor(s) for those that wish to access this. We are likely to see the same pressure coming from offspring of surrogate arrangements. Indeed in the UK, our earliest legislation on surrogacy included the forward thinking provision for those born from surrogates – gestational or genetic - to learn their identity through accessing their original birth certificate & the later 2010 Regulations made paramount the welfare of such offspring. The evidence is robust that identity needs are not shaped by simplistic notions of genetic essentialism but by the complexity of the biographical/cultural map that develops for each individual.

Paternalistic and/or culturally discriminatory assumptions about the future information needs of ‘mitochondrial’ offspring have no place in the modern world: we should not be risking the future well-being of those offspring for whom it may prove important. They are the ones best placed to know what they need so provision needs to be in place now for the possibility that this will include access to identifying & biographical information.

By the same token, medical science does not stand still. What was thought a ‘truth or fact’ yesterday may be overturned tomorrow. That is part of its attraction but also its risks. As more becomes known about the properties of mitochondria, the identification of those involved may assume a greater need in medical terms too.

The status of the mitochondria donor

Q4 (a) In your view how does the donation of mitochondria compare to existing types of donation? Please specify what you think this means for the status of a mitochondria donor.
Your response:

From the viewpoint of professionals, medical scientists and other ‘onlookers’ with no direct involvement in the individual situations, there are clear differences: primarily to do with the extent to which DNA appears to be transmitted. The details of medical scientific knowledge may, of course, change as more knowledge is gained – history tells us that our scientific information base is ever changing and the ‘truths’ of yesterday may change today and tomorrow.

PROGAR’s concerns lie with the impact of mitochondrial donation use on family building and hence on those directly affected: the prospective parents, the resulting child(ren), the donor and any other children affected (for example in the immediate family or in that of the donor). Where donation leads to the formation of life, it carries different meanings and responsibilities to the donation of body parts (e.g. heart, kidney) from one individual to another for their own use in their existing life. We simply cannot predict the meaning that the mitochondrial donor (and the donation itself) will have to those directly affected – and neither is that meaning likely to be (i) static over their lifetimes or (ii) standard either within or across the different ‘groups’ concerned. Human beings are unique and complex and policy needs to take account of this. The experiences of those affected by gamete donor conception – donor offspring, parents and donors – are testament to that. Rather than prescriptive policies, what are needed are policies that minimize risk of harm to physical, mental and social well-being of those affected when managing the impact of mitochondrial donation – giving the greatest priority to the offspring as they are the only ones not involved in the decision to go ahead with their conception using MD but who arguably are likely to be the most affected. In our view, enabling those who wish to access information about the other (whether offspring, parents or donors), using the same operational principles and legislative clout that is afforded to those directly involved in gamete donation – including detailed record keeping and UK wide registers and psycho-social counseling and support - would be appropriate.

Q4 (b): Thinking about your response to 4 (a), what information about the mitochondria donor do you think a child should have? (Choose one response only)
Your response:

Option3

Please explain your choice
Your response:

It follows from our response to Q3 that we strongly support Option 3.

The history of donor conception should not be repeated. Donor offspring have fought hard to establish the right to full information about their personal biographies and we are likely to see the same pressure coming from offspring of surrogate arrangements. Paternalistic and/or culturally discriminatory assumptions about whether or not such offspring will need information to meet their identity (or future medical) needs have no place in the modern world and we should not be risking the future well-being of those offspring for whom it may prove important (see also our response to Q3 above).

Assisted reproduction has long generated heated debates about the appropriate allocation of ‘rights’ among the parties involved. It remains our view – and our belief that this is the most likely to secure longer term family as well as individual well-being – that the rights of the offspring to be conceived through ARTs should be treated as paramount. We do not subscribe to the view that the benefit to a child that might otherwise be born with a physical impairment should be traded against the risk to their identity needs and psychosocial well-being by denying them access to information about the person that donated the mitochondria. The two are not mutually exclusive.

As with donor conception and surrogacy, we believe that parents too would benefit from having access to biographical information about the MD donor as they raise their child, sharing such information in age-appropriate ways. Some may need help and support to understand the value of such an approach and to execute it, so that needs to be in place. This remains equally important whether the donor is known to the parents or a stranger.

It is our view (and that of the BFS) that later information release services should be provided by a dedicated national body with appropriate professional skills in information release and intermediary work, such as those held currently by UK DonorLink staff and post adoption social workers.

Regulation of mitochondria replacement

Q5: If the law changed to allow mitochondria replacement to take place in a specialist clinic regulated by the HFEA, how should decisions be made on who can access this treatment? (Choose one response only)
Your response:

Option3

Please explain your choice
Your response:

Should the decision be made to proceed with mitochondrial donation, then we believe that the social and psychological issues for the individuals concerned and for the wider society are such that the highest level of regulation should be in place, at least for now. This also includes a requirement that psycho-social service provision is fully available prior to, during and in the longer term follow up to the procedures and that detailed record keeping is in place, including UK wide registers.

Regulation and associated research must, in our view, include central attention to psycho-social as well as medical, scientific and developmental psychology aspects. Research must include social science qualitative research, including longitudinal, to capture nuance, ambiguity and meaning to the parties directly concerned rather than only ‘measuring’ progress. Such aspects are vital to obtaining sufficiently full understanding.

Should the law be changed?

Q6: In Question 1, we asked for your views on the mitochondria replacement techniques MST and PNT. Please could you now tell us if you think the law should be changed to allow (one or both of) these techniques to be made available to people who are at risk of passing on mitochondrial disease to their child?
Your response:

We do not offer an organizational response to this question as we believe that to formulate such a response falls outside of our remit.

Further considerations

Q7: Are there any other considerations you think decision makers should take into account when deciding whether or not to permit mitochondria replacement?
Your response:

We have not included reference to academic work here as space does not allow. However we would be happy to provide these if required.

To help you better understand our response, we explain more fully about who we are:

PROGAR (Project Group on Assisted Reproduction) was set up originally at the time of the Warnock Inquiry in the 1980s, taking forward work done by a predecessor group which had submitted evidence to that Inquiry on behalf of the British Association of Social Workers. PROGAR continues to be administered by the British Association of Social Workers, the largest professional association for social workers in the UK with more than 13,000 members employed in frontline, management, academic and research positions in all social care settings

PROGAR draws on the knowledge and expertise of social workers in the fields of infertility counselling, donor linking, adoption and fostering, child care, family work and health care as well as other groups of professionals, academics and people directly affected by donor conception. We work in partnership with:

• British Association for Adoption and Fostering
• British Infertility Counselling Association
• Cafcass (Child and Family Court Advisory and Support Service)
• DC Network
• NAGALRO (National Association of Guardian ad litems and Reporting Officers)
• UK DonorLink

PROGAR has contributed to policy discussions and policy formation in assisted conception on many occasions. The principles underlying PROGAR's work have always been that those conceived as a result of donor procedures and their families, donors of gametes and embryos and their families and those undergoing fertility investigations and treatment should receive the best care possible, including access to professional support. We firmly believe in the importance of early disclosure of origins to donor- conceived individuals, their right of access to identifying information about their donor(s) and that policies and services should take full account of the lifelong implications of donor conception.

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