Draft Consultation Response

Draft of my response to the Mitochondrial Replacement Consultation.

I post it here for two reasons.

One is to encourage others to respond, and to give an example of how the Anscombe Centre's ecellent guidance notes have been turned into answers by one individual - but please don't copy my answers verbatim, as I think that would minimise the effectiveness of both our responses.

The other is to invite correction: if I have misunderstood anything, or got it wrong.

1. Permissibility of new techniques
Having read the information on this website about the two mitochondria replacement techniques, 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. 

My views are that both of these techniques are seriously problematic, for a number of reasons, and should not be offered.

The benefits - having some genetic connection between parents and child - do not justify the procedures. There seem to be no other benefits that could not be realised in other ways.

MST is creating a child from three parents: this creates a series of ethical problems.  One is that it denies the child the natural inheritance of two parents which all other human beings heretofore have had.  That risks creating sever problems around identity.  It also creates problems around knowledge: would a child have the right to know all her or his genetic parents? 

PNT, as I understand it, is ethically even more problematic, as it included the deliberate creation and destruction of two human embryos, as a necessary part of the process.  Again, the resultant child may have severe problems around her or his identity and origins, including a sense of sibling loss (or even sibling sacrifice).

A further risk of both is cultivating an assumption in society that children are, in some sense, commodities that can be created to order. I have profound misgivings about the implications of such an assumption becoming widespread.

2. Changing the germ line
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? 

We are playing here with the very stuff of human life and human identity: of course there are social and ethical implications.  Because we are at the boundaries of existing knowledge and practice, it is not clear precisely what they are, and for that reason alone we should be very wary.  By the nature of it, any change in the germ lines will be passed on from generation to generation: we do not know what we are doing here, or what may result.  Further, once we allow such techniques in principle once, they will doubtless be employed in more and more situations.  There is a real risk of unleashing changes we do not understand, cannot reverse, and which will spread exponentially.

3. Implications for identity
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? 

The attempts to erase the identity of the donor mother in MST strike me as very problematic in terms of the resultant child's identity.  I try to put myself in the shoes of a resultant child and ponder the questions I would have about my origins, parentage and identity, and it is very murky.  Why should we even consider doing this to a child?

Similar considerations arise with regard to PNT: I would see myself as a clone created from the spare parts of two siblings, created and destroyed in order that I might be brought to life. How can we predict what effect that might have on a child?  Why should we do this to someone?

4. The status of the mitochondria donor
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. 

This is a very murky area. In the case of MST, the donor is donating the spindle, that is nuclear genes, but not the egg itself.  So the spindle donor and the egg donor are both partial mothers - an entirely new category that would be brought into existence by this technology.

Likewise in PNT, the pro-nucleus is transferred into a scond egg - but this is then cloned  and the original embryo destroyed.  What does that make the status of the donor? It is very hard to say, but the most accurate description would be the partial mother of an embryo that was always destined to be destroyed.  I suspect donors are likely to struggle with this concept, if they are able to grasp it at all.

Given current concerns about the potential exploitation of donors already, it seems reckless to introduce these further complications and risks, whose impact on the donors is unpredictable.

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

•   The child should get no information
  
•   The child should be able to get medical and personal information about the mitochondria donor,
  but never know their identity
  
•   The child should be able to get medical and personal information about the mitochondria donor
  and be able to contact them once the child reaches the age of 18
  
•   Other
  
•   I do not think mitochondria replacement should be permitted in treatment at all Please explain your choice. 
  

I think that the name mitochondrial replacement is a misnomer: it does not accurately describe either MST or PNT. I also think that neither of them should be allowed, as the risks and ethical concerns they raise far outweigh the benefits, nearly all of which could be realised in other, wholly ethical ways.

However, if MST were to be allowed, I believe it important that any resultant children should have the same rights as any other child conceived using donor eggs and sperm, in terms of knowing all their genetic parentage.

If I have understood it correctly, in PNT there may be as many as four parents involved in the construction of the two IVF embryos, from which a third will be cloned whilst the original two are destroyed. Again, if this labyrinthine process were to be legalised, any resultant children should have the same rights as any other child conceived using donor eggs and sperm, in terms of knowing all their genetic parentage.

I am concerned that this consultation offers a single box to tick, when the issues are so complex: on the one hand, I think (as I have ticked) that neither process should be allowed. But, should they be allowed, I also have views on how some of the impacts should be mitigated: it would have been helpful to have a process that invited such rich responses.  It worries me that such complexity is being reduced to binary thinking.

5. Regulation of mitochondria replacement
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)

•   Clinics and their patients should decide when mitochondria replacement is appropriate in individual cases
  
•   The regulator should decide which mitochondrial diseases are serious enough to require mitochondria replacement and, just for these diseases, permit clinics and patients to decide when it is appropriate in individual cases
  
•   The regulator should decide which mitochondrial diseases are serious enough to require mitochondria replacement and also decide, just for these diseases, when it is appropriate in individual cases
  

 I do not think mitochondria replacement should be permitted in treatment at all Please explain your choice. 

As noted above, I think that the name mitochondrial replacement is a misnomer: it does not accurately describe either MST or PNT. I also think that neither of them should be allowed, as the risks and ethical concerns they raise far outweigh the benefits, nearly all of which could be realised in other, wholly ethical ways.

I have no confidence in regulatory bodies, as their recent history has been lamentable.  Should such techniques be approved at all, I think their should be a clear set of laws limiting them, saying both what is allowed and what is not,  debated and passed in parliament, with no room for ambiguity, interpretation or other erosion.  The regulator's role should be to enforce the law, not interpret or soften it, or campaign for its creative reinterpretation etc...

As in 4c above, I am concerned that this consultation offers a single box to tick, when the issues are so complex: on the one hand, I think (as I have ticked) that neither process should be allowed. But, should they be allowed, I also have views on how some of the impacts should be mitigated: it woul have been helpful to have a process that invited such rich responses.  It worries me that such complexity is being reduced to binary thinking.

6. Should the law be changed?
In Question 1, we asked for your views on these techniques. 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? You may wish to address the two techniques separately. 

I believe that neither MST nor PNT should be allowed, for all the reasons stated above.

I also believe that of the two techniques, PNT is distinctly the worst, as it invovlves the deliberate creation, for foreseen destruction, of human embryos; therefore even if the government is determined to allow some such technology, it should certainly not allow PNT.

7. Further considerations
Are there any other considerations you think decision makers should take into account when deciding whether or not to permit mitochondria replacement? 

This is the wrong response to the problem.

There are far more humane solutions to the problems facing parents who are at risk of passing on disease to any children, one of which is adoption.  I believe that radical improvement of adoption services could serve offer a de-medicalised path to such parents, and also offer better alternatives to women facing crisis pregnancies, thus reducing the number of medical terminations of pregnancy.  Such humane approaches are where the efforts, energy and resources should be directed, rather than ever complex and ethically worrying technological solutions, exciting though these may be to the scientists and medics involved.