'Social Norms in Selective Reproduction: Implications for the Wide Offer of Genetic Screening Technologies' by Ainsley J Newson in ELSIhub comments
The ability to offer genetic information to inform reproductive decisions, for example through reproductive genetic carrier screening, expanded prenatal testing, or preimplantation embryo screening, is increasingly prevalent. A defining feature of such technologies is that they offer information on many genetic conditions in the one test. Common rationales for expanding the offer of such information include that the results can inform people’s decisions regarding selective reproduction or prepare them to parent a child with a genetic condition.
While it remains vital for providers to ensure that decisions about whether to undergo screening can be made autonomously, in alignment with one’s own values, focusing only on individual choice is deficient. It is also important that providers, policymakers, and bioethicists consider the social context in which such choices are offered and made, especially because these contexts and the norms they generate shape and influence individual choice, and such choices are going to become increasingly common.
Scholars of disability theory and feminist philosophy have argued along these lines for a long time. But the importance of attending to social context and social norms when designing and implementing large-scale reproductive genetic screening interventions is now gaining wider attention. ... one can argue that it is imperative that those offering such testing emphasize that testing is a choice and ensure that people undertaking it can access clear and balanced information about the conditions (or groups of conditions) being screened for. It is also important for people to have the opportunity to critically reflect on the reasons they are having this testing and what they might do with the information they receive.
Papers in the particular ELSIhub collection consider
- who gets (and should get) a say in describing disability and difference, how autonomy and responsibility are intertwined and sometimes at odds,
- what the proper role of the state should be in testing (including how public health ethics can help us think about this), and
- how we can reflect on and learn from eugenics practices, including the social risks that arise from a cumulative set of unfettered, private reproductive choices.
