October 11, 2019, by Brigitte Nerlich
Promoting Socially Irresponsible Research and Innovation?: That National Academy of Sciences tweet on genome editing and human enhancement
On the 30th September 2019 the Twitter account of the US National Academy of Sciences (@theNASciences) published the following tweet:
“Dream of being stronger? Or smarter? Do you dream of having a top student or star athlete? Or having a child free of inheritable #diseases? Can human #GeneEditing eventually make this and more possible?
Take the quiz! ow.ly/907c50wu3jv”
The accompanying link directed readers to a page on the National Academy of Sciences’ ‘The Science Behind It’ public engagement page, dealing with gene editing.
The tweet generated a number of critical responses on Twitter. Several of these responses are noted in this blog piece from BioPolitical Times, which also called the NAS tweet ‘an abuse of authority’ (https://www.geneticsandsociety.org/biopolitical-times/more-misstep-nas-twitter-debacle-represents-abuse-authority ). The National Academy of Sciences has since deleted the original tweet and the pages connected to it:
Why did the tweet provoke so much ire?
For Bioethicists like François Baylis, who has just published a book on the ethics of inheritable gene editing[i], the NAS tweet appears to make light of an issue that is deeply morally troubling for many people.
For scientists like Paul Knopfler, a prominent critic of clinics offering risky and unproven stem cell therapies, the reductionist tone of the NAS tweet which suggests that complex traits like intelligence and athletic ability can be enhanced with simple genetic changes, could look very much like distorting ‘science hype’ and misinformation.
The Role of the National Academy of Sciences in the Germline Gene Editing Debate
For many commentators, their concern at the borderline pro-eugenic content of the tweet was very likely compounded by its source. The National Academy of Sciences is hardly a passive bystander in the debates over the proper use of gene editing.
In 2015 the NAS, along with the US National Academy of Medicine and the Royal Society in the U.K. established the International Commission on Clinical Use of Heritable Human Genome Editing, whose explicit mission is to identify important scientific, medical, and ethical dimensions of inheritable or ‘germline’ gene editing in humans. Their own mission statement affirms that such modification could only be performed “if society concludes that heritable human genome editing applications are acceptable”.[ii]
To see the NAS appear to raise, and even encourage, the use of germline gene editing for human enhancement is therefore deeply problematic. The distinction between treating disease – “making people better” – and enhancement which is more about “making better people” has been an important boundary in discussions about how to use responsibly use genetic technologies since long before the current generation of gene editing tools were even discovered.
Most surveys carried out in the last few years show that there is some public support for using heritable genetic modification to treat serious diseases, but very little for enhancing intelligence or athletic ability as suggested by the NAS tweet. [iii]
It is tempting to write the NAS tweet off as a poorly judged attempt to engage the public with an issue that might otherwise seem obscure and technical. Indeed, that is what I hope it genuinely was.
But it is difficult to shake the suspicion that it represents something more; a recurrence of that old tendency of some within the scientific establishment to regard the public more as an inconvenient problem to be overcome than as genuine partners in shared decision making about what futures we want to pursue.
The Trouble with ‘Technocracy’
Technocracy – the idea that most decision making is best left to experts working behind closed doors, is a hard idea to shift. It has obvious attractions for states and professional elites alike. And yet much of the economic, political and societal malaise currently affecting many parts of the world, stems, at least in part, from the limits of technocratic approaches.
The old assumption, that technical expertise- having a better knowledge of science, technology, law, business, or some other professional domain, also means having greater insight into the best- that is the societally most desirable- course of action, can no longer stand.
It is not a matter of pitting facts against values. Rather, negotiating equitable and just uses of technology requires taking account of everyone’s values – of diverse conceptions of the good and how these can be balanced in an egalitarian society.
The NAS tweet is disturbing and wrong because it presumes to tell its audience what they ought to be excited about, what the desirable technology-enabled future looks like, rather than listening to them.
Ultimately germline gene editing might prove to be a genuinely ‘disruptive’ technology because its consequences are so potentially far reaching and transformative that it may finally lead to the kind of public engagement that social scientists have been calling for, for years:
A dialogue that invites open discussion not simply of an isolated technology framed in terms of ‘good’ or ‘bad’ uses, but of the whole system of how science is funded and who decides what work is worth supporting, the commodification and privatisation of much publicly-funded science through patents and other intellectual property rights, the role of industry in shaping which technologies are brought to market, what forms they take and how much they cost, and of a regulatory system that defines harms mainly in term of measurable physical risks, but often neglects issues of access, unequal distribution of risks and responsibilities among the populations, and threats to social and cultural values raised by novel technologies.[iv]
[i] Françoise Baylis (2019) Altered Inheritance: CRISPR and the ethics of human germline genome editing. Harvard University Press: Harvard.
[ii] The National Academies of Science, Engineering and Medicine. Human Genome Editing Initiative: http://nationalacademies.org/gene-editing/index.htm
[iii] See for example Hendriks S, Giesbertz N A A, Bredenoord A L and Repping S (2018) Reasons for being in favour of or against genome modification: A survey of the Dutch general public. Human Reproduction Open, 2018(3): doi:10.1093/hropen/hoy008; Lawton G (2018) Revealed: What the UK public really thinks about the future of science. New Scientist, 3196 (September 2018) Available from https://institutions.newscientist.com/article/2179920-revealed-what-the-uk-public-really-thinks-about-the-future-of-science/ (Accessed 26th July 2019); Michie M and Allyse M (2019) Gene modification therapies: views of parents of people with Down syndrome. Genetics and Medicine 21: 487-492; Pew (2016) U.S. Public Wary of Biomedical Technologies to ‘Enhance’ Human Abilities: Pew Research Center, Science & Society. Available at https://www.pewresearch.org/science/2016/07/26/u-s-public-wary-of-biomedical-technologies-to-enhance-human-abilities/ (Accessed 4th Augisy 2019).