Hype and genomics: arguing for precautionary implementation to uphold autonomy in preconception screening

A/Prof. Ainsley Newson1

1Sydney Health Ethics, University Of Sydney, University Of Sydney, Australia

In May 2018, the Australian government announced a significant investment in health genomics: $500m over 10 years for an Australian Genomics Health Mission. The first project within this funding will be a $20m national implementation of population preconception screening. This ambitious initiative aims to offer any couple planning a pregnancy access to carrier testing for a range of genetic conditions; with the aim of offering reproductive choices to couples shown to have a high chance of having a child with one of the selected conditions.

This kind of information will undoubtedly be alluring. However, appropriate implementation of this and similar programs should recognise that not all information may be useful or desired. There is concern about increasing offers of genetic information in reproductive decision-making, particularly whether expanded ranges of tests may induce people to use them. There are also worries that genomics risks being over-hyped, leading to ‘technology-led’ implementation within the health system.

This paper will present and argue in favour of ‘precautionary adoption’ of genomics in the context of pre-conception screening. The paper will discuss how, despite its somewhat unpopular position in bioethics literature, the concept of ‘precaution’ might be useful as this program is rolled out. We also require a re-thinking and optimisation of the critical application of concepts such as reproductive autonomy, including the place of information and critical reflection.

These concepts can help ensure that the line between over- and under- use of genetic tests during reproductive decision-making can be appropriately drawn; ensuring that these tests are offered when it is appropriate to do so, but also while protecting a rich conception of reproductive autonomy.


Biography:

Dr Ainsley Newson is Associate Professor of Bioethics and co-Deputy Director at Sydney Health Ethics, University of Sydney. Her research focuses on the ethics of genetics, genomics and reproductive technologies, specifically how new tests, technologies and interventions can be developed and implemented appropriately. Ainsley’s research is strongly oriented to practical ethical issues and she has forged many successful collaborations with clinical and research geneticists. She has published her research widely. She is also Co-Investigator and Ethics Lead within the Australian Genomics Health Alliance and an Investigator on several other Category 1 funded projects. Ainsley is also active in bioethics policy development, including as Co-Chair of the Education, Ethics and Social Issues Committee of the Human Genetics Society of Australasia.

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