The Tension Between Enhancing Reproductive Autonomy and Carrier Responsibility: An Empirical Ethics Analysis of Preconception Expanded Carrier Screening

Through identifying "carrier status," preconception expanded carrier screening aims to provide prospective parents with information about their reproductive likelihood of conceiving a child with a genetic condition. This article presents an empirical ethics analysis of this form of screening, hence combining qualitative interviews with a critical ethical analysis, with the aim of examining ethical aspects of "carriership." The thematic analysis of the qualitative interviews showed a relationship between responsibility and carriership, and three aspects were identified in what is here called preconceptual reproductive carrier responsibility: a view of the self as genetically at risk, a normative claim about the responsibility to engage with the screening technique in order to prevent suffering, and responsibility as being future-oriented. The article is contextualized against the theory of biomedicalization and feminist ethical perspectives on responsibility as part of a social and cultural practice. It is claimed that responsibility can function regulatively, where socially constructed norms of what counts as responsible action can limit what a couple understands as being required of them. This calls for further reflection on individual autonomy within this screening practice, acknowledging that genetic technology shapes and changes social attitudes to responsibility in relation to reproduction and that couples' choices are situated within such contexts.