Moving genetic carrier screening from the clinic to the population: ethical considerations

Professor Ainsley Newson1, Dr Lisa Dive1

1Sydney Health Ethics, University of Sydney, , Australia

Reproductive genetic carrier screening (RCS) has existed in various forms for over half a century. Originally offered to people with certain ethnic backgrounds or a particular family history, RCS is now becoming much more widely available. It is also being used to screen for a significantly expanded number of recessive or x-linked genetic conditions. This increased reach is occurring through both state-funded screening programs and increased test provision from commercial companies. The wide population offer of RCS tends to be justified on grounds such as enabling reproductive choice and preventing family suffering. However, broadening RCS also gives rise to ethical challenges.

In this paper we highlight ethical considerations arising from what we term the ‘scaling up’ of RCS. Issues in scaling up include gene selection and variant reporting, whether to test on an individual or couples basis, and the communication of results. We argue that there is a need to distinguish between clinical and population health contexts when offering information about carrier status. Further, this distinction is best underpinned by an ethical approach informed by public health ethics in addition to clinical ethics. Public health ethics can help ensure the ethical rollout of wide population RCS by attending to social conditions that can significantly affect people’s capacity to exercise their reproductive autonomy. Moreover, values inherent to ethical public health, such as equity, are essential to underpin ethical population RCS.


Biography:

Ainsley Newson is Professor of Bioethics at the University of Sydney. Her research considers how genetic, genomic and reproductive technologies can be used appropriately across the lifespan, to benefit both individuals and populations. Ainsley’s current research projects examine reproductive autonomy, expanded carrier screening, commercial interests in IVF and mitochondrial donation.

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