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December 3, 2018

The Ethics of Heritable Genome EditingNew Considerations in a Controversial Area

Author Affiliations
  • 1Warren Alpert Medical School, Brown University, Providence, Rhode Island
  • 2Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Harvard University, Cambridge, Massachusetts
JAMA. Published online December 3, 2018. doi:10.1001/jama.2018.18270

On July 17, 2018, the UK-based Nuffield Council on Bioethics released its long-awaited report on the social and ethical issues raised by heritable genome editing.1 The significance of the report has only been heightened by unconfirmed news from China of the birth of twins whose genomes are said to have been edited before implantation.2 Heritable genome editing denotes the modification of the DNA of an embryo, sperm, or egg to alter the characteristics of future generations.1 Unlike earlier reports, this report rejects drawing a distinction between therapeutic heritable genome editing (eg, corrects disease-causing genes) and heritable genome editing intended for cognitive or physical enhancement (eg, augments stature or other attributes).1,3 According to the report, either approach “could be ethically acceptable” as long as such interventions are (1) “intended to secure, and are consistent with, the welfare of a person who may be born as a consequence” and (2) “uphold principles of social justice and solidarity” and “should not produce or exacerbate social division, or marginalise or disadvantage groups in society.”1 The main underlying principle of the report was that “the desire of people…to secure…the welfare of their children by using genome editing to influence their inherited characteristics gave rise to a morally powerful claim.”1 In this Viewpoint, we examine the report and explore the Nuffield Council on Bioethics’ rejection of the notion that genes alone account for who humans are (ie, genomic essentialism) as key to the formulation of their recommendations.

Editing the genome of human gametes or embryos is a disruptive unactualized technology and continues to be the subject of a wide range of concerns.4 The chief concern is the safety and efficacy of such an intervention and the unintended errors that it might cause for future generations through the modified germline (ie, the gametes through which the genome is passed on to future generations).4 Additional concerns revolve around the equity of access to these innovative interventions. The benefits of heritable genome editing should not preferentially accrue only to affluent individuals.1 A separate set of objections, often framed in religious terms, focuses on the sanctity of human life, the dignity of procreation, the hubris of human intervention, and the usurpation of divine power. Additional concerns include the threat to disability rights (eg, deaf culture), the prospect of state-sanctioned eugenics, the cascading generational effects, and the rights of potential progeny whose consent can not be sought. Heritable genome editing has also been implicated in constraining genetic diversity while perpetuating conformity and homogeneity.5 The unforeseen costs of successful enhancement have also been raised as a potential concern.5

A 2018 survey of 2537 adults in the United States by the Pew Research Center drew a sharp distinction between support for the therapeutic (72% approval) and enhancement (19% approval) objectives of heritable genome editing.6 The results echoed disagreement among scholars, whose views have proven equally divergent. The survey results further suggested that familiarity with the medical imperative to cure disease may have been accepted by the public for therapeutic heritable genome editing. Replacing a mutant gene with its wild-type counterpart appears to have been granted moral equivalence to other medical interventions. No such level of comfort has been accorded to the prospect of physical or cognitive enhancement through heritable genome editing. In the public perception, ethical comparability between heritable and conventional modes of cognitive enhancement (eg, education) remains remote, and there are still concerns regarding revising the laws of nature.5

A key argument against heritable genome editing intended for enhancement draws on the notion of genomic essentialism, according to which genetics is the foundation of human nature.5,7 This school of thought asserts that genes comprise the essential self and thereby the essence of human identity. Facetiously referred to as Genes “R” Us, this reductionist outlook views a person as the sum of his or her genes or the nucleotide components of those genes.5 This conception is hardly insignificant, in that the equation of genes with destiny may raise the specter of state-sanctioned eugenics. A related objection to heritable enhancement upholds the genome as the embodiment of humanity’s common heritage, dignity, and diversity, and, thus, as being unalterable.8 Enshrined in Article 1 of the Universal Declaration on the Human Genome and Human Rights, which is a key position statement of the United Nations Educational, Scientific, and Cultural Organization, concerns are raised about heritable genome editing in general, and, particularly, the prospect of enhancement.8

While reviewing of the notion of genomic essentialism, the Nuffield Council on Bioethics report questions the distinction between heritable genome editing intended for enhancement and conventional postnatal measures intent on promoting growth and development.1 In so doing, the Nuffield Council on Bioethics posits that “genomic intervention is only one…and probably not the most significant - of the decisions that parents will make that affect their offspring,”1 and that the effect of heritable genome editing intended for enhancement “need not be of greater magnitude than that of interventions such as physical training, educational approach, inculcating moral conscience, etc.”1 It is further explained that “given the variation in expression in different people and different circumstances, genomic interventions may not be any more effective than other controls except in some highly unusual cases.”1 When the attention of the report is shifted to the notion of the genome as the common heritage of humanity, it is written that “the kind of ‘genomic essentialism’ that would link human dignity or human rights to the possession of a particular kind of genome seems incoherent since the human genome is not a single, stable thing, nor is it distinct in all particulars from the genomes of other organisms.”1 In addition, the Nuffield Council on Bioethics rejects the claim that “editing the genome of one’s descendants might amount to an infringement of human dignity,”1 and concludes that “what is morally important about human beings is not dependent on the possession of a particular set of genomic variations.”1

The prospects and timetable of heritable genome editing remain unknown. Reliable therapeutic heritable genome editing will likely emerge before heritable genome editing for enhancement purposes, for which the timeline is far less clear (the claims emerging from China remain uncorroborated). Recognizing these uncertainties of time, the Nuffield Council on Bioethics report concludes by stating that “there are no absolute ethical objections that would rule these interventions out in all circumstances, for all time.”1 In so doing, the report sets itself apart from recommendations from the 2017 US National Academies report, which carefully distinguished between the therapeutic and enhancement varieties of heritable genome editing.3 The US National Academies report recommended that “regulatory agencies should not at this time authorize clinical trials of somatic or germline genome editing for purposes other than treatment or prevention of disease or disability.”3 None of these transatlantic distinctions, however, are likely to be of practical consequence any time soon. The scientific underpinnings as well as the feasibility of enhancement heritable genome editing have yet to be elucidated. For these reasons, now is the time to initiate a broad societal debate on the desirability and acceptability of heritable genome editing with enhancement in mind. The report recommends nothing less when it calls for the “establishment of a separate body or commission…independent of Government…which would…produce an understanding of public interest(s) through promotion of public debate.”1

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Article Information

Corresponding Author: Eli Y. Adashi, MD, MS, Warren Alpert Medical School, Brown University, 272 George St, Providence, RI 02906 (eli_adashi@brown.edu).

Published Online: December 3, 2018. doi:10.1001/jama.2018.18270

Conflict of Interest Disclosures: None reported.

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United Nations Educational, Scientific, and Cultural Organization. Universal Declaration on the Human Genome and Human Rights. Paris, France: United Nations Educational, Scientific, and Cultural Organization; 1997. http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights/. Accessed October 3, 2018.