04 Apr 2023
Last month I spoke at the Federation of European Biochemical Societies (FEBS) annual conference in Jerusalem about genome editing, bioethics and human rights. My invitation came via the Bioethics Committee of the Council of Europe, of which I was a member until the end of 2016, although my talk offered a personal perspective and not that of the Committee. The Council of Europe is the body responsible for the European Convention on Human Rights and (among other things) the Convention on Human Rights and Biomedicine; formed in 1947 and therefore predating the communities that became the European Union, the Council of Europe has 47 members (whereas the EU has 28 – all too soon to be 27), encompassing states from Ireland and Portugal in the west and Iceland in the north to Russia and Azerbaijan in the East and Cyprus in the south. My contribution was part of a ‘science and society’ session at the conference. In an otherwise rather technical event, the session was well attended and – judging from the discussion – the audience was very thoughtfully engaged with the issues. The following picks out some of the points from my presentation and was previously posted to the FEBS Network.
Genome editing refers to a way of making precisely targeted modifications at the molecular level in living cells, harnessing the cells’ inbuilt repair mechanisms to repair a deliberate, double-stranded DNA break in a way that may either disable or introduce a functional DNA sequence. CRISPR-Cas9 is a recent technique that can achieve this with impressive speed, facility, efficiency and economy.
I want to distinguish between three kinds of ethical question that are raised by genome editing and given added urgency by the rapid diffusion and refinement of CRISPR-based systems. The first is what might be thought of as the content of traditional medical ethics. Questions of this kind concern the protection of the rights and interests of individuals through measures that regulate the conduct of treatment, such as requirements for informed consent. The second kind of question concerns what I have called ‘public ethics’. This involves considerations of justice in society, and the disturbance or evolution of public moral norms (addressing, for example, the fear of ‘slippery slopes’, the impact of innovations on those in positions of vulnerability, the content of the public interest and collective visions of the ‘good life’). The third kind of question relates to categorical or universal moral judgements, for example, whether a given practice could be shown to constitute a violation of 'human dignity' and therefore, by hypothesis, be unacceptable anywhere, in any circumstances, ever.
My interest is in opening up what I think is an urgent discussion about the second and third kinds of question, and particularly, the relation between them. These are brought into focus by taking a perspective that considers genome editing as an ‘emerging biotechnology’ (or, rather, as a technique that, in combination with other knowledges, practices and materials, finds a range of concrete applications in certain organisational, social, political and economic conditions). To treat genome editing as an emerging biotechnology is to invite questions about how innovation might be governed to avoid socially and morally undesirable outcomes, to secure the public interest and to benefit humanity. This is a different way of proceeding than asking whether it is morally acceptable to use genome editing in a specific set of circumstances or, alternatively (depending on how imaginatively this is thought), asking under what conditions such use would be acceptable. It asks, rather: what would it be like to live in a society in which genome editing were in use?
The emergence of genome editing and its potential application to human embryos presents a distinctive prospect, distinctive because it does not concern therapy (it does not treat a person with a disease) but, rather, gives effect to preferences for the characteristics of future generations. (These preferences are, principally, that the offspring should be genetically related to their parents and then that at least one further genetically-conditioned trait should be included or excluded.) Unlike selection among preimplantation embryos (PGD/PGS), the achievement of these preferences is not dependent on the outcome of natural recombination and, therefore, is not limited to the same range of possibilities. It raises the possibility, in other words, of future people with genotypes that nature could not produce.
It is widely acknowledged that any initiative along these lines would be recklessly premature, if not categorically wicked. But which of these things it would be is important to consider. A starting point is provided by Article 13 of the Council of Europe Convention on Human Rights and Biomedicine, which represents the only binding international law that provides explicitly for human genome modification. It says: “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.” This rather economically achieves two things: first, it limits all genetic modifications, whether in treatment or research, to those that have a medical purpose; second, it prohibits deliberate modification of the human germ line.
The Convention was drafted so as to strike a balance between securing the benefits to be gained from scientific research and protecting individuals, societies and future generations from the misuse of science and medicine. At its origin twenty years ago, however, two uncertainties were left unresolved: first, the uncertainty about risks of genome modification to future generations, given the (then) current state of scientific knowledge; second, uncertainty about whether there could be any acceptable heritable genome modifications (and, if so, how to distinguish these from the unacceptable ones). As we approach the point where sufficient scientific knowledge (relevant to uncertainty of the first kind) may come within our grasp, the production of moral knowledge (to address uncertainties of the second kind) is becoming an urgent task. Recognising this, the Council of Europe Bioethics Committee (DH-BIO) made a statement in 2015 that acknowledged the need to re-examine the Convention in the light of developments in scientific knowledge (a need foreseen in the Convention itself, and provided for in its Article 32). This moral knowledge is not, however, something that can be discovered in a laboratory; it must be produced through reflection and debate. And this debate must be public because it is through this debate, the debate that produces moral knowledge, that, at the same time, the moral community constitutes itself. (This, too, the drafters of the Convention provided for, in Article 28.) From where we stand at present, therefore, Article 13 of the Oviedo Convention on ‘Interventions on the human genome’ should not be seen as the final word in this debate but, rather, as its opening gambit.
Over the last two years and more, many further statements on this question have been debated, promulgated and discussed. Although there is much overlap and sympathy between them, they do not all say the same thing or tend in the same direction. Moreover, there are vast constituencies whom they have not yet engaged. It is far from clear that these initiatives will coalesce into a final consensus, even a consensus about a minimum condition (such as the need for sufficient knowledge about safety) on which all can agree – they may, in fact, lead to differences that break across a morally significant distinction. What, then, might be the consequences for moral community?
What might be called ‘geo-ethical’ differences between communities and jurisdictions have been tolerated before. (Nation states have different and mutually inconsistent provisions for human embryo research, for example.) In such cases it has been possible, more or less, to elaborate ways in which such differences can be accommodated in conformity with fundamental human rights, given a suitable margin of appreciation. In the case of intergenerational genome modification, however, it is alleged that by enabling the alteration of the ‘species itself’, genome editing has the potential to ‘change the foundation of human rights’. It would violate ‘human nature’ and call forth the ‘posthuman’.
I offer two thoughts about this. The first is that incremental adjustments (particularly to restore wild type alleles) do not constitute a radical change in ‘human nature’; in any case, it is not the ‘nature’ that is the basis of human rights but the ‘human’, which is, in the end, political. The second, then, is that whatever the ground of ‘human’ rights is, it should be seen as a threshold rather than a property exclusive to natural kind or class. It follows, therefore, that such rights as are currently enjoyed by humans should equally extend to a non-human, a posthuman or even an artificial intelligence, who is capable of being welcomed into our moral community.
Malcolm Muggeridge put it well: “So the final conclusion would surely be that whereas other civilizations have been brought down by attacks of barbarians from without, ours had the unique distinction of training its own destroyers at its own educational institutions, and then providing them with facilities for propagating their destructive ideology far and wide, all at the public expense. Thus did Western Man decide to abolish himself, creating his own boredom out of his own affluence, his own vulnerability out of his own strength, his own impotence out of his own erotomania, himself blowing the trumpet that brought the walls of his own city tumbling down, and having convinced himself that he was too numerous, labored with pill and scalpel and syringe to make himself fewer. Until at last, having educated himself into imbecility, and polluted and drugged himself into stupefaction, he keeled over--a weary, battered old brontosaurus--and became extinct.”
prof premraj pushpakaran writes -- 2017 marks the 20th anniversary of the Convention on Human Rights and Biomedicine (Oviedo Convention)
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