Abstract
This chapter examines what responsibilities fall on present generations with regard to future generations in relation to the use of reproductive biotechnologies, in particular responsibilities regarding their genetic constitution. Setting aside contingent risks associated with the technologies themselves, three kinds of potential mischief are considered: that the use of such technologies threatens the ground of human dignity for future generations, that it disfigures the moral relationship between one generation and the next, and that it may exacerbate injustice among members of a moral community. The discussion is broached from a secular perspective, in critical dialogue with the tradition of European humanism and taking account, in particular, of Article 16 of the UNESCO Declaration on Bioethics and Human Rights.
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Notes
- 1.
Article 16 provides: ‘The impact of life sciences on future generations, including on their genetic constitution, should be given due regard’ (UNESCO, 2005).
- 2.
On the different constructions of risk and proportionality in reprogenetics innovations, see Mills, 2020.
- 3.
- 4.
I will not here be concerned with preconception screening. However, it is worthy of note that genetic science is already entering the sphere of partner selection (Mansky, 2018). Gamete donors are routinely screened for several health conditions, in some cases not only to exclude variants but, for example, to match carrier donors with non-carrier recipients where only a carrier is available and following appropriate counseling.
- 5.
This implies a token identity between genes and traits, although the matter is more complicated, as most variants lack the simple orthogonality that would make them independently selectable.
- 6.
The question of the possession of a human soul and human dignity arises, in an interesting way, in the case of human-animal hybrid organisms (what became known in some contexts as ‘human admixed embryos‘).
- 7.
Sentience research suggests that non-human animals may form conceptions of ends in ways that were not previously recognized, which stokes the suspicion that we might have got the problem upside down by searching for a way of distinguishing humans from other animals. Indeed, my argument below suggests that ‘human rights’ are not a property of a class of beings (‘humans’) but rather open to those who are recognized as belonging to a community (which is only helped by meeting a certain threshold of sentience that would lead to their recognition).
- 8.
Article 3(2) of the Universal Declaration on Bioethics and Human Rights (under the rubric ‘Human dignity and human rights‘) provides that ‘The interests and welfare of the individual should have priority over the sole interest of science or society.’
- 9.
This was around the time of the sequencing of ‘the complete human genome’ (which was, of course, not a single genome or the genome of any human, or, indeed, complete). The Human Genome Project ran from 1990 to 2003; the UNESCO Declaration was broadly contemporaneous with the Council of Europe’s ‘Oviedo’ Convention and several similar initiatives (Council of Europe, 1997).
- 10.
‘Heritage,’ as it is usually understood in the relevant lexical economy, means something to be preserved (albeit that it is usually something of historical or cultural importance).
- 11.
Article 6 of the contemporaneous Declaration on the Responsibilities of the Present Generations Towards Future Generations (entitled ‘Human genome and biodiversity’) seems to link the genome and the protection of the species when it provides: ‘The human genome, in full respect of the dignity of the human person and human rights, must be protected and biodiversity safeguarded. Scientific and technological progress should not in any way impair or compromise the preservation of the human and other species’ (UNESCO, 1997b). If this is a way of discharging the obligation in Article 3 (‘Maintenance and perpetuation of humankind’) of the same declaration, then the ‘nature and form’ of human life is not a way of life so much as a form of embodiment of which the genome is the condition.
- 12.
The phenomenon that most closely corresponds to it what is popularly described as the human ‘gene pool,’ the set of variants in the genomes of humans who are alive (or perhaps, setting aside the problem of demarcating the terminal points of the series, of humans who have yet or may yet been born).
- 13.
The class of humans includes, of course, those with trisomies, where an extra copy of certain chromosomes, usually chromosome 21 or the sex chromosomes, is present.
- 14.
’ The morally significant distinction here is between unplanned evolutionary mutations and deliberate interventions. Article 24 makes this clearer: it explicitly recognizes that practices ‘such as germ-line interventions’ ‘could be contrary to human dignity’ and charges the International Bioethics Committee of UNESCO to make recommendations and give advice on these (see section “Transgenerational Transformations” below).
- 15.
‘No one has ever been born with, the human genome, while the nearest thing to an inviolable uninterrupted person-to-person germ ‘line’ of inheritance comprises the 37 maternally inherited mitochondrial genes that avoid the hurly-burly of sexual reproduction: genes so highly conserved as to be among the least exclusively ‘human’ of all.’ (Hitchcock, 2016).
- 16.
Nevertheless, actual wild-type variations are merely a subset of the set of possible variations (those that might have come about through evolution, that are no biologically proscribed but that simply did not occur as a result of reproductive encounters or mutagenesis) and that may come about in future. In any case, there are undoubtedly many variants that belong in this subset that exist without having been described. Mitochondrial donation is an interestingly ambiguous case: is it a ‘germ-line intervention.’ It is clearly an intervention in what is passed down—otherwise, there would scarcely be a point in doing it. The often-repeated claim that mitochondrial donation does not alter any fundamental characteristics of the resulting child is manifestly self-contradictory (on its own terms)—it is hard to think of a more fundamental characteristic than a serious genetic disease among the things that distinguish people one from another. But is it an intervention in ‘the human genome’? Many claim it is not. They make a distinction between the reconstruction of a cell and the alteration of a molecule. It is as if dignity is being hunted by anatomy. So we have the bizarre conclusion that mitochondrial donation is a germ-line intervention that could be, but arguably is not, contrary to human dignity since it does not affect the genome.
- 17.
This may, indeed, have been a fear in the 1990s when the instruments referred to above were drafted; at that time, gene function was assumed to be more orthogonal – ‘a gene for…’ – and the recombinant DNA technologies that were then in view were thought capable of being applied to produce transgenic beings.
- 18.
Though this is an admittedly tortured conclusion, it is for this reason that the Nuffield Council on Bioethics recommended ‘that governments in the UK and elsewhere give consideration to bringing forward an international Declaration affirming that people whose genomes have been edited should be entitled to the full enjoyment of human rights.’ (see: NCOB, 2018).
- 19.
A version of this thought was raised concretely with laboratory phenomena created using genetic material from different species. See, for example, the debate over what became known as ‘human admixed embryos’ in the UK. The question was part jurisdictional (‘were such entities covered by the relevant law and subject to the controls that governed the treatment of human embryos?’) and part moral (‘should such entities be afforded the implied “respect” – not, of course, “rights” – due to human embryos?’). The discussion in 2008 was somewhat tortured and entertained the facetious concept of the enjoyment of legislative protections depending on genetic ‘preponderance’ of ‘human’ DNA (which turned out to mean DNA of human provenance).
- 20.
This notion of non-instrumentalization derives most famously from Kant’s second formulation of his categorical imperative: ‘Act in such a way that you always treat humanity, whether in your own person or in the person of any other, never simply as a means but always at the same time as an end.’ (Kant, 1785, p.91 – italics in original.)
- 21.
Habermas says: ‘Bringing about a situation in which we might eventually reject an afflicted embryo is as dubious as selection according to criteria defined by one side only. Selection in this case [the case of PGT] cannot but be one-sided, and therefore instrumentalizing, because there can be no assumption of an anticipated consent…’ (Habermas, 2003, p.68).
- 22.
The question of modification (as opposed to selection) is potentially more complicated, as the future person is continuous with a single embryo that has been modified but which might not have been modified. However, if the intervention is wrong because it is ‘enframing’ in the way suggested, then the non-identity rejoinder may still be persuasive because, if the intention to modify were a condition of the existence of the embryo to be modified (and therefore of the future person), without the modification that person would not be there.
- 23.
Joel Feinberg, for example, has notably proposed the concept of an anticipatory ‘right to an open future’ to create an obligation to safeguard a future person’s options, in order not to restrict their capacity to author their own life as a moral agent in their own right (Feinberg, 1980). By hypothesis, this allows us to intervene while showing respect for ends; indeed, we may, by our intervention, actually express respect for the future person’s ends by increasing their capacity for autonomous self-realization. Safeguarding the right to an open future would involve safeguarding not those things that we expect to be valuable to this or that future person (since we cannot know anything about that person), but rather those things that would be valued by any possible future person, no matter whom they turn out to be. However, the ‘open future’ approach may inescapably embed normative visions of what is valuable about human life and what it is for humans to flourish. While they involve responsibility, reproductive decisions cannot involve obligation because (1) the absence of mutuality does not fulfill the form of obligation and (2) the non-identity problem makes the content of the obligation indeterminable.
- 24.
It is sometimes objected that this situation is inconsistent with natural conception (the state does not and should not police the bedrooms of feckless procreators, nor does it condemn them ex post facto). However, we may need to consider situations in which, if not intervening directly, ‘procreative irresponsibility’ is strongly discouraged or discriminated against either socially or through indirect state measures (shifting norms). A response to this is that it would be a significantly greater infringement of individual freedoms to intervene in their reproductive activities than to control access to professional services. However, some libertarians make the argument that access to services should also be uncontrolled.
- 25.
The British bioethicist John Harris offers a utilitarian account of the duty to intervene positively that technology affords: ‘We must not act positively so as to cause harm to those that come after us, but we must also not fail to remove dangers which, if left in place, will cause harm to future people.’ (Harris, 1992). As Habermas sees it: ‘Exercising the power to dispose over the genetic predispositions of a future person means that from that point on, each person, whether she has been genetically programmed or not, can regard her own genome as the consequence of a criticizable action or omission.’ (Habermas, 2003, p.82, emphasis in original).
- 26.
‘By depriving the fusion of two sets of chromosomes of its contingency, the intergenerational relations lose the naturalness which so far has been a part of the taken-for-granted background of our self-understanding as a species.’ (Habermas, 2003, p.72) This, he says, disturbs the ‘communicatively structured form of life,’ the ‘ethics of the species.’ On affective opposition, see the epigram from Habermas – one of the most notable proponents of this is the conservative Leon Kass, who authored the phrase ‘the wisdom of repugnance’ (Kass, 1997). The objection that interference with what is given by Nature is wrong does not necessarily depend on the attribution of metaphysical agency or design. The view that natural processes are more proven than hubristic human interventions is deeply engrained in folk morality and attitudes to risk and uncertainty (NCOB 2015). Unease about limits of human understanding or interference in complex processes that link biological, environmental and social systems is, after all, only prudence, especially where it is narrowed around a crudely genetic framing, and even though it may be articulated in somewhat mystical terms (Bostrom & Sandberg, 2008).
- 27.
‘But why – if biotechnology is subtly undermining our identity as members of the species – should we want to be moral? An assessment of morality as a whole is itself not a moral judgment, but an ethical one, a judgment which is part of the ethics of the species.’ (Habermas, 2003; emphasis in original)
- 28.
Habermas (quoted in a previous note) betrays this through the term ‘genetically programmed.’
- 29.
Disability scholarship has been struggling for half a century or more against the reduction of people to their distinctive forms of embodiment.
- 30.
The term ‘eugenics’ was coined by Francis Galton in the nineteenth century, long before the molecular mechanisms of inheritance were described. Governments, including Germany, England and the US have had eugenic policies in the nineteenth and twentieth centuries. These have involved violations of human rights, including compulsory sterilization, forced euthanasia, racism, and genocide, which have inspired contemporary human rights law.
- 31.
Thus Article 3(2) of the Charter of Fundamental Rights of the EU provides, ‘In the fields of medicine and biology, the following must be respected in particular:… the prohibition of eugenic practices, in particular those aiming at the selection of persons’ (European Parliament, Council and Commission, 2000).
- 32.
An example that is often given is that of the sickle cell trait, which is prevalent in tropical latitudes, and which research has found to be protective against Malaria endemic in those regions (Allison, 1954).
- 33.
We could not do this selectively because that would be plainly unjust, but (arguably) we should not do it comprehensively either (by withholding technology), because that would place the interests of society above the interests and welfare of the individual (Art.3 of the Universal Declaration on the Human Genome and Human Rights ).
- 34.
So-called ‘third-generation rights,’ like the right to health care, and what that involves (particularly whether it involves access to reprogenetics services) are evolving and contextual. But the reprogenetics industry is underpinned not so much by questions of avoiding inherited disease (which can be achieved in a variety of ways) but by reproductive freedom, particularly the interest of prospective parents in having a child who is a direct genetic descendent of both of them.
- 35.
The ‘expressivist objection’ holds that reprogenetics interventions express (hitherto implicit) negative social attitudes towards people with certain forms of embodiment and may even compound such attitudes or exacerbate a social environment that is hostile to people with disabilities more generally. (Parens & Asch, 2000).
- 36.
If we have arrived at a permission decision (‘Can we implement this technology: yes or no?’) it is already probably too late to shape the technological trajectory, and only oppositional debate is likely. And yet most reproductive treatments are developed between patients, clinicians and scientists.
- 37.
As certain forms of embodiment (Downs’ syndrome, for example) become more unusual, those people’s social and material needs are likely to become less well accommodated.
- 38.
In the description, ‘commits’ is meant to have a level of inexorability or logical entailment that means that ‘if X then Y’ or ‘not X and not Y’ (i.e., X cannot obtain and Y be averted). The chain of intermediate terms can be extended arbitrarily as long as the entailment relation holds between them.
- 39.
https://www.grandviewresearch.com/industry-analysis/in-vitro-fertilization-market Approximately half of IVF procedures are carried out in the Asia Pacific region.
- 40.
It is usually (although, to my mind, not unproblematically) assumed that where public resources are used, they should be drawn from health care budget allocations.
- 41.
The inheritance of epigenetic marks appears not to be well understood at present and is an area of developing research (see Lind & Spagopoulou, 2018; this editorial fronts a special issue of Heredity on the subject).
- 42.
At present, the ‘epigenetic responsibility’ of public authorities naturally attaches to the tractable conditions, although there is an interesting question about whether, in the face of intractable conditions, there might be a responsibility to explore technological remediation involving modification of the human genome. Some (e.g., Baylis & Robert, 2005) have made the point that runaway climate change might present human beings with an existential threat that could close at a pace to which random human evolution cannot respond.
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Mills, P. (2021). Cool Cynics, Indifferent Relativists and Affective Opposition: Secular Approaches to Protecting Future Generations. In: Tham, J., Garcia Gómez, A., Lunstroth, J. (eds) Multicultural and Interreligious Perspectives on the Ethics of Human Reproduction. Religion and Human Rights, vol 9. Springer, Cham. https://doi.org/10.1007/978-3-030-86938-0_23
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