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Why germline genome editing may be discriminatory

13 November 2017

By Dr Calum MacKellar

Calum MacKellar is director of research for the Scottish Council on Human Bioethics.

Appeared in BioNews 926

On the 20th anniversary of the 1997 European Convention on Human Rights and Biomedicine (Oviedo Convention), the Council of Europe Committee on Bioethics organised an international conference entitled 'Relevance and Challenges' last month in Strasbourg, France.

At this meeting, delegates discussed the reasons behind Article 13 of this convention, which prohibits intentional germline procedures. Article 13 indicates that:

'An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.'(1)

This means, according to paragraph 91 of the Explanatory Report to this convention, that:

'Interventions seeking to introduce any modification in the genome of any descendants are prohibited. Consequently, in particular genetic modifications of spermatozoa or ova for fertilisation are not allowed.'(2)

During the event, there was repeated questioning of how the fundamental equality in worth of all human beings could be protected if Article 13 was deleted or amended. However, no clear answer was given.

This was unfortunate because the selection of future human beings, based on their possible quality of life, is at the very core of germline procedures. For example, when a one-cell embryo, or sperm and egg cells before they are used in conception, are edited, a new individual who would not otherwise have existed is being brought into being. Indeed, any change, no matter how small, to the variables in the creation of an individual results in a very different person coming into existence.(3) In other words, with most germline procedures one is not treating someone who exists, but making sure only certain persons, and not others, are brought into existence.

This is the important non-identity dilemma which has not really been addressed, to any extent, by any of the wide-ranging reports studying the ethical consequences of genome editing, such as the one prepared in 2017 by the US National Academies of Sciences and Medicine.(4) However, this dilemma needs to be addressed since making sure that only certain kinds of children are brought into existence, based on their possible quality of life, may also suggest that there is such a thing as a 'life unworthy of life' in society.

Of course, it is possible to argue, as does the 2017 US Academies' report, that 'unconditional love for a disabled child once born and respect for all people who are born with or who develop disabilities are not incompatible with intervening to avert disease and disability prior to birth or conception'.(4)

But that report does not explain how or why any deliberate selective discrimination can be seen as acceptable before birth or conception while suddenly becoming unacceptable when a person is present.(5)

As the Dutch ethicist Hans Reinders at the Free University of Amsterdam argues: 'In any given case, the only reasonable answer to the question of why a disabled child should not be born is by reference to what one thinks about the lives of people living with the same disorder.'(6)

This means that if parents decide not to have a child with a serious genetic disorder based solely on genetic reasons and not other factors, such as a lack of societal support for disability in a country, there is a very real sense that they are doing so because they would prefer one possible future child over another. In other words, this decision contradicts the important principle that the lives of all human beings have the same worth and value, regardless of their state of health.(7)

It is also inevitable that the indirect message being given with such a view is that had one known, with hindsight, that someone was going to be affected by a certain kind of disability then one would have selected to create another individual. This, however, can clearly be considered discriminatory and would undermine the inherent equality in value of all persons in society.

To be sure, a lot has already been written about this objection, called the 'expressivist argument'.(8) What is more, for some people, including a number of individuals affected by disability, this message may not be problematic. But for others, it may be seen as extremely offensive and discriminatory.(9) It is, moreover, no answer to simply state that these people are misguided or mistaken in being offended by such a message. 

More fundamentally, it is only possible to select between persons, including possible future persons, on purely genetic reasons if all ethical reasoning is reduced to consequentialist perspectives. 

But the Council of Europe does not do this. Instead, it recognises the equality of value and worth of every human life, regardless of whether it is short and difficult or long and pleasurable. This is one of the founding principles of the Council of Europe. Accordingly, if all persons, including all possible future persons, are considered to be fundamentally equal in value and worth, how can a choice between any of them ever be made?

This also means that Article 13 cannot be amended or only a moratorium on germline procedures accepted, without undermining the radical equality between all human beings, which is the very basis of civilised society.

The Council of Europe must, therefore, continue to uphold the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations in 1948, which recognises in its preamble that 'the inherent dignity and...equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world'. 

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Published by the Progress Educational Trust

CROSSING FRONTIERS

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Andy Greenfield

Dr Anna Smajdor

Dr Henry Malter

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross

Sandy Starr


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