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Preimplantation Genetic Diagnosis: The Who, the What, the Why and the How


 

Germline in the sand: The ethics and law of engineering the embryo

25 January 2016

By Antony Blackburn-Starza

Appeared in BioNews 836

The UK has now seen its first application to use CRISPR genome-editing techniques in human embryos (see BioNews 835). However, before the techniques can be used in clinical practice, the law will have to be changed. The final session of the Progress Educational Trust (PET)'s conference 'From Three-Person IVF to Genome Editing: The Science and Ethics of Engineering the Embryo' debated the ethical permissibility of human embryo genome editing, as well as the kind of regulatory framework that would govern the techniques.

Chaired by PET's chair of trustees Fiona Fox, the expert panel interrogated the boundaries of reproductive liberty, raising questions about the regulatory response to risk, consent, and the social consequences of genome editing.

First to present was Emily Jackson, Professor of Law at the London School of Economics and Political Science, who started by acknowledging that there may well be good reason to proceed with caution in this area. There could be unintended side effects – for example, a genetic association with one risk may well protect against another. Bearing this in mind, and given that for some people selecting embryos using PGD would be both cheaper and simpler, genome editing may not be the best option.

On the other hand, the fact that a future child cannot give consent to the risks their parents take is not a good reason to restrict the use of these techniques. Professor Jackson pointed out that, if we take the view that unborn children must consent to the risks their parents take, then this would have all sorts of undesirable implications. Yet with regard to permitting research to proceed, we can still be confident that the UK has a robust regulatory system. Clinical use would not be possible without further legislative action, and use without a licence would be a criminal offence.

Next to speak was Dr Calum MacKellar, Director of Research at the Scottish Council on Human Bioethics, who questioned whether even a cautious, controlled approach to human embryo genome editing would be acceptable. He used the example of a young child with a serious genetic disorder who by the age of three would lose most of her abilities and be unlikely to live into her teens. For her parents, the use of genome-editing techniques to treat the existing child would be a positive development and would not raise ethical issues, apart from safety and efficacy. However, he points out that the parents would not wish to exchange their existing child for a different, healthier child (and if they did express such a wish then most people would be appalled). 'It is the disorder, not the existence of the child, that is the cause of the heartache,' he said. In the case of human embryo genome editing, rather than treating an existing person, the technique ensures that a person (as represented by their original genome) is not brought into existence.

Dr MacKellar questioned whether we as a society can ever agree that some people should exist and some should not. He argued that human dignity requires us to treat everybody equally and that it is imperative that society values each and every person – to respect people as themselves and not their genetics. It is not a lack of compassion that causes some people to question human embryo genome editing, but a refusal to make a choice between who can and cannot exist. He argued that any form of prenatal selection sends a message that all people are not equal in value and worth, and some people should not be brought into society. Beginning to classify the worth of others is to start going down the road of eugenics, he said.

Following on from this was Revd Dr Brendan McCarthy, National Adviser to the Church of England on Medical Ethics, who sought to position himself as the 'critical friend' in the room. While his clarification of the Church of England's position on genome editing – not opposed in principle, but could be in favour if shown to be safe, effective and fair – made the headlines, his searching line of questioning demonstrated the complexity of the issues under discussion.

Is genome editing safe? This is not just a clinical question, explained Revd McCarthy, given the disparity that privately funded IVF creates in society. Is it 'socially safe'? Will it work? Given parents' expectations of techniques like mitochondrial donation, and the portrayal of suffering in the media, will it work in the way the public expects it to? Is it wise? Are we doing this for the benefit of children or prospective parents? (If the latter, we need to be clear about this.) Finally, is it ethical – will it be life affirming? Will it increase the care of vulnerable people? Will the techniques lead to a more caring society? True to his role as the one to ask the 'difficult questions', Revd McCarthy disagreed with those who said the debate on mitochondrial donation took too long. There is a need for more, not less debate, he said.

Challenging this was John Harris, Emeritus Professor of Bioethics at the University of Manchester, who was next to speak. He said that yes, we can have too much debate. If we continue to debate after the point these techniques could be safely introduced it would delay saving lives and that 'would be wicked' – gene editing must be pursued and made safe enough to be used in humans. He highlighted that every year 7.9 million infants are born with birth defects; 3.2 million of these are disabled for life – many with conditions that will be passed on to their own children. It is therefore a fallacy, he argued, to say that the germline is sacred and genome editing should not be pursued because it affects future generations as this is also true for all assisted conception techniques and, indeed, all reproduction.

It is also a fallacy to argue that genome editing constitutes an unacceptable risk, Professor Harris continued. Human reproduction is dangerous, perhaps more so than genome editing – had sexual reproduction been invented, it would never have been licensed! So, if normal human reproduction is the 'gold standard' for permissible risk, then would genome editing meet this threshold? Furthermore, given that some people affected by genetic conditions, like mitochondrial disease, will continue to reproduce without treatment, the decision becomes a choice between a form of reproduction with risk, and the other with the possibility of risk that may never come about.

Finally, responding to the argument that an inability to obtain consent from the child is a reason not to pursue genome editing, Professor Harris pointed out that we make decisions for others all the time. Consent is irrelevant in this context. Parents inevitably make decisions for future generations that children cannot consent to; the moral imperative is to make the right decisions, he said. For Professor Harris, pursuing genome editing is then both the logical and moral option.

In the discussion that followed, the panel was asked whether editing the genome of an embryo could be described as a therapy or enhancement, whether there is a difference between treating somebody before or after they are born, and whether treating somebody who 'doesn't exist' can be termed a therapy at all.

Dr MacKellar replied that, in an egalitarian society of equal worth and value, how can we make a distinction between real and potential persons? If someone decides not to have a child with a risk of genetic disease, but they are nevertheless in a position to cope with such a child, then in his view that is a eugenic decision. It is a value judgment to say that child does not have a quality of life that is acceptable to us.

However, the notion that parental decisions about children in utero could be equated to value judgments about the worth of the future child was challenged by one audience member, who pointed out that a decision to take or not to take folic acid during pregnancy, for example, does not mean the child is valued any differently.

For Professor Harris, allowing people to make reproductive choices – even unwise ones – is a million miles away from eugenics. But once reproductive decisions are taken at a policy level and choice becomes institutionalised, this is where totalitarianism kicks in, he said. Professor Harris defended reproductive choice even if one wouldn't necessarily approve of the choices made. If it is not wrong to wish for something, how does it become wrong to use technology to select for it?

Revd McCarthy said that a balance between exercising freedom to choose in one direction, and deciding for the common good in the other, can be reached by asking the most basic questions. Why not? Why ought we?

Meanwhile, Professor Jackson pointed out that the Human Fertilisation and Embryology Authority will not simply be answering yes or no to human genome editing, but will engage with a range of questions and reach each decision on a case-by-case basis. It seems, then, that the ethics may well continued to be debated long past any legislative reform to permit the techniques in treatment.

PET would like to thank the sponsors of its conference – Merck, the Edwards and Steptoe Research Trust Fund, Ferring Pharmaceuticals, the London Women's Clinic, the Medical Research Council and Wellcome Trust.

SOURCES & REFERENCES

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