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Handle with care: genome editing

by
11 September 2015

The latest research on modifying human embryos needs further probing, argues Robin Gill

AP

For further investigation: a laboratory test of mitochondrial DNA

For further investigation: a laboratory test of mitochondrial DNA

IT WAS reported last week that an influential coalition of scientists is lobbying for a change in the law to allow for research leading to the genetic modification of human embryos. The coalition includes scientists from the Wellcome Trust and the Medical Research Council.

This lobby is driven by two very different scientific possibilities. The first has been much discussed already: the possibility of replacing (using a healthy donor) the diseased mitochondria in affected embryos before implantation (sometimes dubbed "three-parent" embryos).

The second has been known to scientists for a while, but has yet to be widely reported: genome editing. This is a novel technique, previously applied to non-human embryos, in which sections of genetic code are spliced out and replaced. This second proposal is clearly a form of human genetic modification (often termed as producing "designer babies") that is currently illegal if applied to human embryos that are to be implanted.

 

I COMPLETED my term on the Nuffield Council in Bioethics in January. While I was a member, we had extensive discussions about the ethical implications of the first of these proposals. This led eventually to the publication of our 2014 report Novel Techniques for the Prevention of Mitochondrial DNA Disorders (available free at www.nuffieldbioethics.org/project/mitochondrial-dna-disorders/). The council is now discussing the ethical implications of genome editing.

The proposal to replace diseased mitochondria caused me considerable anxiety. It does not actually involve genetic modification, since mitochondria, fragments of DNA inherited from one’s mother that surround the nucleus, are not part of the genetic code. Yet they are still a powerful — although not fully understood — influence on embryos, as is shown by the fact that diseased mitochondria can lead to serious, even fatal, neonatal de-formities.

In addition, by agreeing to this development, many would see it as a first step towards genetic modification, as the lobbying scientists demonstrate. Both techniques involve changes to embryos that would be passed on to future generations — for better, but perhaps for worse.

 

I NEEDED to be reassured on three issues before I could agree to the mitochondria proposal. The most important was that there were strong compassionate grounds for it to be allowed. I listened to the stories of some of the clinical scientists involved directly with women who are desperate to have a child, but know that their own mitochondria are too diseased to have a healthy baby.

The second was that there was no other, better-understood, and safer technique (such as selecting a healthy egg using pre-implantation genetic diagnosis) that would achieve a disease-free baby. We learned from the scientists that some women had no healthy eggs at all.

The third was that the technique had been carefully tested for safety. We were told about the tests that were already being used to establish this, and concluded that the development was likely to lead to much healthier babies for a tiny group of affected women — and that this appeared preferable to, and perhaps more ethical than, surrogacy.

In my view, it will be vital that each of these points is considered carefully by the Nuffield Council in Bioethics for the prospect of genome editing. I know just how thoughtful and caring are the scientists, medics, lawyers, philosophers, and social scientists, on the council — several of them committed people of faith — as well as two theologians: the Revd Dr Michael Banner, and Professor Mona Siddiqui.

 

THERE is, however, an additional and difficult ethical issue that they should consider. The mitochondria proposal, if and when it finally happens, will involve only a tiny group of women, whereas the prospect of human genome editing could theoretically involve any birth.

The scientists who are lobbying for it emphasise its potential for eliminating genetic diseases or disabilities, but even the concepts of "disease" and "disability" are remarkably elastic. When does a genetic "difference" become a serious disability or disease, and who determines what is "serious"? We might all agree that life-shortening genetic conditions such as cystic fibrosis are serious, but what about congenital short-sightedness?

The sociologist and Quaker ethicist Tom Shakespeare, a council member, has used his own experience of familial achondroplasia (having short limbs) to question attitudes to disability. During his career, he has changed his mind, from once regarding disability as simply a social construct, to an approach "which neither reduces disability to an individual medical problem, nor neglects the predicament of bodily limitation and difference. . . People are disabled by society and by their bodies" (Disability Rights and Wrongs, Routledge, 2006). This is a deeply complex and contentious area.

 

IN PRACTICE, doctors dislike being forced to discriminate between patients, allowing some to have a particular form of treatment, and others not. This is understandable, but it has led, for example, to a dangerous overuse of antibiotics, resulting in antibiotic resistance. If human genome editing is allowed for some genetic disorders, what is finally to stop it spreading into straightforward human enhancement? That surely is the fear behind the label "designer babies". I suspect that it is a widespread fear.

This is a proposal, I believe, that will need very careful consideration before any enactment. Some argue that, whatever the British decide, it will happen somewhere in the world — a Chinese team has published the first attempts to alter the genome of human embryos — but that is not an ethical justification.

Britain now has an important track-record of careful ethical discussion, monitoring, and governance in medical research and practice. Human genome editing, if it is ever allowed, will need all three.

 

The Revd Professor Robin Gill is editor of Theology and Canon Theologian at Gibraltar Cathedral.

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