How do genetically disabled adults view selective reproduction? : impairment, identity and genetic screening

Background: Genomic medicine is rapidly evolving, particularly in the domain of reproduction. Population carrier screening for a range of disorders is becoming possible using whole genome/exome sequencing. However, very little is known about the views of genetically disabled attitudes towards selective reproduction. Methods: Forty-three in-depth qualitative interviews were carried out with adults living with different types of genetic condition, recruited through support groups and clinics. Interviews covered participants’ experiences of their condition and their views towards genetic intervention in reproduction. Thematic analysis of the data using Nvivo 11 was undertaken and participants were assigned categorises as either supporting, not-supporting, or having ambivalent views. Results: The majority of participants (65%) expressed either disapproval of, or held ambivalent views towards, selective reproduction. Key reasons for non-support included regarding genetic impairment as part of personal identity and the prioritisation of social and environmental barrier removal. Key reasons for support of selective reproduction included negative and externalising attitudes towards genetic impairment and a belief in the importance of informed reproductive decision-making. Conclusion: The degree to which participants identified with their impairment, more so than how they valued it, was significant in determining attitudes towards selective reproduction. Those who supported genetic screening viewed their impairment as separate to themselves, whilst participants who considered their impairment as integral to their identity were most likely to report ambivalence or negative attitudes. Policy makers and stakeholders considering the role of genetic carrier screening panels might usefully engage with adults affected by heritable disease as well as disability identity politics when considering the acceptability and social impact of genetic screening programmes