The Ethical, Legal, and Social Implications of Genomics and Disability: Findings from a Scoping Review and Their Human Rights Implications

Abstract

Objectives

Genomic advancements affect people with disabilities. This paper presents the findings of a scoping literature review on the ethical, legal, and social implications (ELSI) of genomic technologies for people with disability. The human rights implications of the ELSI findings are then discussed briefly with reference to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

Methods

A systematic search of the ELSI literature was conducted. Via a process of abstract screening and full-text review, 288 sources of evidence were included in the review. Data extraction involved identifying the ELSI discussed in each source, which were thematically analysed to generate ELSI themes and to identify relevant linkages to the UNCRPD.

Results

Ten ELSI themes were identified as having relevant UNCRPD linkages including reproductive autonomy, issues related to cost and access, the downside of knowing about one’s genetic makeup, lagging legislation in light of the rapid advancement of genomic technologies, genetic discrimination, the stigmatisation and devaluation of people with disabilities, the potential resurgence of eugenics and the medical model of disability, and the involvement of people with disabilities in conversations about genomic technologies. These themes have relevant and direct linkages to several UNCRPD rights including equality, non-discrimination, diversity, accessibility, full participation, identity, and freedom of expression.

Conclusions

The review findings highlight that there is scope for the development of a charter on human rights specific to genomic technologies in the context of disability, which could guide ethical and socially appropriate developments in the field of genomic technologies in future.