Pathways from Genomic Innovations: Navigating Equity and Access in Global Healthcare to Avoid Ableism

Genomic innovations (GIs) continue to evoke attention across the globe. Such innovations can be utilised in prophylactic or remedial ways. However, while genomic information can provide data on the functioning of genes and predispositions, they do not reveal the extent to which, or how, a person may be affected by a given disease. The implications of such matters are explored in this chapter. This chapter is based on a 20-month, three-phase research project that studied public, potential patient, and expert opinion on possible uses of heritable human genome editing (HHGE) in the United Kingdom. Findings shared in this chapter reveal hopes surrounding applications of HHGE, how future promises continue to shape research and development of GIs, and the influence of matters relating to equity and access to support for such technologies. The use of genome-editing technologies within the realm of human reproduction is not yet legal in any country. However, the use of somatic editing to treat some genetic diseases is legal in several countries and continues to offer hope for some people living with previously incurable diseases. In this chapter, the author argues that equitable access to clinical applications of GIs could obviate the reasons people seek transnational care, and avoid the perpetuation of ableism.