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Report makes case for creating ‘designer babies’

20 July 2018

Church’s adviser on medical ethics calls for an ‘inclusive debate’ on the topic

iStock

Genome editing techniques used in research can alter DNA sequen­ces in living cells to change a variant of a gene

Genome editing techniques used in research can alter DNA sequen­ces in living cells to change a variant of a gene

EDITING the DNA of a human embryo, sperm, or egg to influence the characteristics of a future person could be ethically acceptable in certain circumstances, an independent report has concluded.

The report, Genome Editing and Human Reproduction: Social and ethical issues, was published this week as part of an ongoing inquiry by the Nuffield Council on Bioethics, prompted by the “rapid emergence” of genome editing techniques, such as the CRISPR-Cas9 system, in the past six years.

These techniques, which are now widely used in research, show that it is possible to make precisely targeted alterations to DNA sequences in living cells: for example, to change a variant of a gene that may give rise to a predisposition to cancer in later life to one that does not.

The use of heritable genome editing — that is, to alter the DNA of a sperm, egg, or human embryo cells — is currently illegal in the UK, however.

An interdisciplinary working party was established by the Council after the publication of its initial review 18 months ago, to explore further the ethics of heritable genome editing (Comment, 25 November 2016).

Its report offers two guiding principles that, it recommends, should be considered before heritable genome-editing interventions are made. These are that the intervention “must be intended to secure, and be consistent with, the welfare of the future person; and should not increase disadvantage, discrimination, or division in society”.

Furthermore, heritable genome editing interventions should be permitted only when there have been a “sufficient opportunity for broad and inclusive public debate” about its use and possible implications; further research undertaken to establish clinical safety; and assessments carried out on the risks to individuals, groups, and society.

The public debate should be facilitated by a new independent body in the UK, it suggests. And if the technique were to be permitted under these conditions, it must be strictly regulated by the Human Fertilisation and Embryology Authority (HFEA) in the UK, and licensed on a “case-by-case” basis.

The Church of England’s national adviser on medical ethics, the Revd Dr Brendan McCarthy, said on Tuesday that the report made a “notable contribution” to an important ethical debate, and supported the Council’s call for a “broad and inclusive societal debate” on the topic.

“This inclusive debate must actively welcome, and listen to, participants from all parts of society including faith communities,” he said. “The C of E has already contributed to this discussion and will continue to do so, emphasising key ethical principles of affirming the intrinsic value of human life, caring for the vulnerable, creating a caring and cohesive society, and respecting individuals.”

A position paper produced by the Mission and Public Affairs Council in 2016 agrees with the guiding principles to “assess the margins” of clinical and social risk. Affirming life, caring for the vulnerable, building a cohesive society, and respecting individuals should also be considered, it says.

“The potential impact of genome editing on societal attitudes to disability requires careful consideration. While it would be wrong to suggest that minimising or eradicating some causes of physical impairment ought not to be pursued because of such concerns, the issue deserves to be thoughtfully examined.

“. . . the Church of England has argued that life ought to be viewed in a wider context and that human life has an intrinsic value apart from its instrumental use or the value set on it by individuals themselves. This means that we ought to view life both as set within the whole environment of human relationships and as part of a continuum from one generation to another.”

Canon Robin Gill, Emeritus Professor of Applied Theology at the University of Kent, said that the guiding principles were “vital. . . however it will be exceedingly difficult, if not impossible, to satisfy the first principle without serious risk to individuals.

“Only by intervening will we have full knowledge of the side-effects of particular genetic interventions, but to act without such knowledge is to put individuals (and perhaps future generations) at serious risk.”

The chair of the Nuffield working party, Professor Karen Yeung, Professorial Fellow in Law, Ethics, and Informatics at the University of Birmingham, said: “Because the moral acceptability of intervening in the human germ line with the aim of affecting the traits of future children is highly contested, often engaging deeply held views, I was acutely aware that, whatever conclusions the working party arrived at, some people were bound to oppose and even abhor them.”

The chair of the Nuffield Council on Bioethics, Professor Dave Archard, said: “There may be good reasons for allowing some parental preferences to be met, but we need to be careful that the use of genome editing to help parents to exercise these preferences doesn’t increase social disadvantage, discrimination, or division, and that close attention is paid to the welfare of those involved, especially any child born as a result.”

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