Thursday, 5 February 2015

Mitochondrial Replacement Therapy

Parliament voted on Tuesday overwhelmingly for legislation to allow mitochondrial replacement therapy.  This is a process which aims to solve a genetic condition that leads to the early death of children caused by mitochondria which does not function as it should.  The process involves the removal of genetic material from a woman's egg cell that carries the faulty mitochondria and transferring them into a donor egg which carries healthy mitochondria.  Fertilisation takes place through IVF.  The resultant embryo carries DNA from three people and this has given rise to the media referring to 'three parent babies', though the hosting egg only carries around 0.1% of its original DNA.  This is the most controversial side of the technique and the level of ethical concern revolves around what the affect of that 0.1% genetic material is.

According to a Church of England submission to the HFEA in 2012 if mitochondria's role is only to act as a 'cell factory', then it does not affect the hereditary characteristics of the resulting child, and so is not significant for the shape of that child's identity.  The Church of England paper says that further research into this is needed.

Because the process involves IVF more embryos will be made than will be used.  The unused ones will be destroyed.  As research takes place all of them are destroyed.  For some this is itself immoral because they see human life as beginning at conception.  Most do not take that view, seeing life as emerging as the embryo implants and potential is actualised so there is not the same ethical prohibition.  However, this does involve material which contains the potential for life and so its use has to be carried out with respect and care.  This is not, as some have argued, just the same as blood transfusions or organ transplants.  The stuff of life is sacred and any use of it is a taken very seriously and there is appropriate caution around it.  How we treat the potential for life is linked to how we regard life itself, so there is an ethical framework to consider.  This is another ethical pressure point in the process.

The resulting child's identity is formed in part by its genetic coding and the addition of a fraction from a third party is either significant here or irrelevant, depending on the role played by mitochondria.  Those advocating the procedure believe this is irrelevant.  Identity is also socially shaped and parenting is about much more than just genetics as the child grows and develops.  The child is shaped and nurtured in relationship with a myriad of people and in response to experience.  That said people do need to know where they come from and the mother's mitochondria is used in some aspects of family tracing, so it may be necessary to record the change so that there is a point of reference.  The DNA is changed by this process, however fractional, and that will be passed down to subsequent generations.  Concern has been expressed that the approval given by parliament was for the donor to remain anonymous.

Undoubtedly the quality of life for the children born through mitochondrial replacement therapy will be improved.  It will remove this cause of heartbreak for their parents.  Parliament have opened a door to this.  The HFEA have yet to draw up the ethical framework for any licenses they issue in the future so it is unclear what the timescale here will be.  It is a significant development and a line has been crossed.

This process touches core ethical issues.  Who we are is more than our genetic code but that coding is significant.  People have a deep need to know where they come from and where they belong.  Hereditary traits are drawn from the code passed down the generations.  We are persons in relationship, not just a random collection of coding.  Mitochondria replacement doesn't seem to affect that, though there are limits on what is known in this area and the Church of England response in 2012 said more research was needed.

When life begins is an underlying ethical consideration.  Potential for life is not the same as actual and so while we want to treat embryos with care and respect that does not preclude their use.  Many fertilised embryos do not implant naturally and are flushed out of the body.  For those who take a different view, this will be a deal breaker.

Alterations to DNA involve a redesigning of the ensuing child.  This is about more than 'designer babies' because the motive is to save life and preserve life not just adapt it for some lesser desire.  Any alterations to the genetic code has to be assessed for the underlying purpose behind it.  This is an important consideration for why an exception should be made in this case.  There is a parallel discussion about how we regard those with disabilities and when those are life threatening and when they are not.  What are the restrictions on how far we would consider it appropriate to change the DNA that makes us who we are?  What value do we place on the lives of those who don't measure up to whatever standard we choose to measure them against so that it is appropriate to change their coding, and how do we decide on that criteria to measure them against?  We have restrictions at the moment on what we will allow and what we won't, because the language of consumer choice is not appropriate when we are talking about life and its rich diversity, which includes disabilities.  Some disabilities we would like to remove and some bring a blessing that challenges the able bodied in ways that surprise them.  Each development moves the starting point for future debates and small steps need to be assessed in the light of how we regard life, value those who are different and the warnings from the past of eugenics.

As human beings we have the capacity to understand the building blocks of the universe and adapt them.  This can be for good, for healing and wholeness and the relief of great suffering.  It can be for ill, for evil intent and for misguided ideologies, of which 'designer babies' and eugenics are two examples.  The moral framework we employ in deciding what it is appropriate to do and what is it not is shaped by the purpose we think life has and what we think it means to be human.

So, put very simply, we are moving towards adjusting the 'software' coding of our DNA to remove 'a bug' in the system which causes great suffering and death.  The aim is compassionate.  As with all of these developments the ethical questions need to be scrutinised so that we properly assess what we are doing.  The decision has been made.  It is now for the HFEA to regulate this and impose the ethical boundaries on how it operates.

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