Reinterpreting “genetic identity” in the regulatory and ethical context of heritable genome editing

Abstract

Heritable genome editing (HGE) is prohibited by several international conventions for a number of reasons, including the protection of “genetic identity.” This article provides a conceptual analysis of the concept of “genetic identity” and offers normative reflections as to how it should be interpreted in the context of HGE. In particular, this article examines the purported right to retain “genetic identity” and the right-to-know “genetic identity” in order to explore the possible implications of these understandings on the debate concerning HGE on nuclear genome. We argue that a right to retain “genetic identity,” that is a right to an untampered genome, is unlikely to be plausibly established if the current international provisions are used as the basis for governing the use of HGE, due to both conceptual and practical ambiguities. We note that the international framework may be more nuanced if it directly engages with what it means to “preserve humanity.” Furthermore, drawing on the existing literature on identity formation, we argue that “genetic identity” based on a narrative-based understanding of identity should be given more weight in the context of HGE because it better safeguards the interests of the children born via the technology, should the technology be legalized for clinical use.

Keywords:

• heritable genome editing
• genetic identity
• children

Acknowledgement

The authors thank three anonymous reviewers for their constructive feedback on our manuscript. Many thanks too to the editors of this themed issue.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Scientist He Jiankui is charged of “illegal medical practice” and has been sentenced to three-year imprisonment and a fine (Nature News, January 3, 2020).

2 Note, whether the clinical application of HGE can be categorized as “therapeutic” remains contentious. For instance, Mills (2020, 129) observes that the claim for “therapeutic” use in the context of HGE is misleading because the technique does not treat an existing individual but rather bring an individual with certain preferred characteristics into existence.

3 MRT involves replacement of unhealthy mitochondria with a healthy one from a third party. In the UK, it is used to prevent the transmission of serious mitochondrial diseases. Note, it has been argued that “mitochondria replacement technique” is a misleading language when the procedure is in fact a “nuclear genome transfer” (see, e.g., Nisker 2015).

4 “Germline,” as Juengst explains, ends in an organism’s reproductive cells since germline technically means the lineage of dividing cells within an organism that link its embryonic stage with its fully differentiated reproductive cells.

5 According to Juth (2016, 418), genetic determinism connotes the view that “a person is a product solely of his genes” and other factors such as the environment become less significant. A closely related concept is genetic essentialism that is the view that genes “determine the essence of who we are.” These concepts, although phrased differently, carry a common feature: that genes can explain human traits. What is problematic with the essentialism and determinism view is that it connotes excessive reliance on the impact of genes on the formation of human characteristics, thus giving genes “more causal power than what scientific consensus suggests” (Gericke et al. 2017, 1224–1225).

6 Article 1 of the Universal Declaration on the Human Genome and Human Rights 1997.

7 It is worth noting that although mitochondria are commonly known as energy provider to the cells (thus providing the UK government with the justification that mitochondria play only a minor role in identity), this is open to dispute. For instance, Mcbride, Neuspiel, and Wasiak (2006) suggest that there are extended roles carried out by mitochondria which include directing and controlling of cell cycle which eventually affects body capacity.

8 See, The Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015.

9 Ibid, Regulation 11(c); section 31ZA(2A) where it provides that only non-identifying information of the mitochondria donors is allowed upon request.

10 The context that Wolf discusses is genetic discrimination due to the advance of genetic tests. The concern is that people will be given labels and thus disadvantaged based on genetic information. Instead of genetic discrimination, Wolf argues that the harm at issue should be deemed as “geneticism.”

11 For a brief overview of different theories of narrative identity, see for instance, Cho (2018); Blasi and Glodis (1995).