Systematic scoping review of the concept of ‘genetic identity’ and its relevance for germline modification

Abstract

EU legislation prohibits clinical trials that modify germ line 'genetic identity'. 'Genetic identity' however, is left undefined. This study aims to identify the use of the term 'genetic identity' in academic literature, and investigate its relevance for debates on genetic modification. A total of 616 articles that contained the term were identified. Content analysis revealed that the term was used in various and contradicting ways and a clear understanding of the term is lacking. This review demonstrates that the EU legislation is open to interpretation, because of the diversity of meaning with which 'genetic identity' is currently used. Because of the diversity of meaning with which 'genetic identity' is used and understood, further reflection is needed. This requires further medical, legal, ethical and social debate and a coordinated response at both a European and a global level.

Shifting to a model of donor conception that entails a communication agreement among the parents, donor, and offspring

“…Every child inherits a different set of genes expressing phenotypes such as their appearance and abilities from their biological parents. Those notions are collectively termed genetic identity [ 29 ]. Consider the identity of monozygotic twins.…”

Making and Managing New Biological Entities: conceptual, ontological, epistemological, and ethical aspects

“…Technologies producing new biological entities challenge established concepts, like person, agency, offspring, and identity (Goekoop et al 2020).…”

“…Correspondingly, PeBEs raise conceptual controversies with respect to what we call "person" (e.g., with respect to chimeras) and "consciousness" (e.g., with brain organoids) or identity (Goekoop et al 2020), offspring, and motherhood (B Hofmann 2022; Callaway 2016). The point here is not to review all the conceptual issues related to all kinds of new PeBEs, but to underscore that they raise such issues and that their person-relatedness forces us to take these aspects into account.…”

“…PeBEs raise identity issues (Shoemaker 2008;Goekoop et al 2020) as a person's cells are part of the person and make (up) the person, but are not the person. The same goes for tissues and organs, with a potential exception of the brain, which has stirred foundational controversies (Wiseman 2020).…”

“…The person-or thing-relatedness is crucial for the question of objectification and commercialization of PeBEs where some argue about organoids that "commercialisation of organoids is legitimised by a detachment of the instrumental and commercial value of organoids from their associations with persons and their bodies" (Boers, Van Delden, and Bredenoord 2019) while others would argue that it will introduce a new form of ownership over persons ("biological slavery") (Goekoop et al 2020).…”