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.