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Fetal information as shared information: using NIPT to test for adult-onset conditions

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Abstract

The possibilities of non-invasive prenatal testing (NIPT) are expanding, and the use of NIPT for adult-onset conditions may become widely available in the near future. If parents use NIPT to test for these conditions, and the pregnancy is continued, they will have information about the child’s genetic predisposition from birth. In this paper, we argue that prospective parents should be able to access NIPT for an adult-onset condition, even when they have no intention to terminate the pregnancy. We begin by outlining the arguments against testing in such a situation, which generally apply the same considerations that apply in the predictive testing of a minor to the fetus in utero. We then contend, firstly, that there are important practical considerations that support availability of testing for prospective parents regardless of their stated intentions. Secondly, we object to the ethical equation of a fetus in utero with a minor. We base our analysis on a view of pregnancy that conceptualises the fetus as a part of the gestational parent, as opposed to the more common ‘container’ model of pregnancy. We suggest that fetal information is best conceptualised as shared information between the gestational parent and future child. Thus, it should be approached in similar ways as other kinds of shared information (such as genetic information with implications for family members), where a person has a claim over their own information, but should be encouraged to consider the interests of other relevant parties.

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Notes

  1. Excepting cases of drugs and medications that do not cross through the placenta; but this is in the same way many drugs do not reach all tissues or parts of the body.

  2. We might however consider resource allocation and utility considerations – it does not seem useful for clinical geneticists to offer, for example, genetic ancestry testing – however, as outlined, it is very possible that the information about the fetus’ HD predisposition may have significant utility for the parents.

  3. According to a liberal theory of law, regulation that restricts individual activity can be justified on the basis that it prevents harm to others. This can be traced back to John Stuart Mill: John Stuart Mill, ‘On Liberty’ in Warnock, Mary, (ed), Utilitarianism and On Liberty (Blackwell Publishing, 2nd ed, 2003) 88, 94. We argue in this paper that there is insufficient evidence of harm to the future child in this scenario and that any potential harm can be prevented or at least mitigated through careful counselling and support to prospective parents.

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Acknowledgements

Research conducted at the Murdoch Children’s Research Institute was supported by the Victorian Government’s Operational Infrastructure Support Program. This research was supported by an Australian Government Research Training Program (RTP) Scholarship.

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Authors and Affiliations

  1. Biomedical Ethics Research Group, Murdoch Children’s Research Institute, 50 Flemington Rd, Parkville, VIC, 3052, Australia

    Hilary Bowman-Smart & Michelle Taylor-Sands

  2. Department of Paediatrics, University of Melbourne, Parkville, Australia

    Hilary Bowman-Smart

  3. Melbourne Law School, University of Melbourne, Carlton, Australia

    Michelle Taylor-Sands

  4. Victorian Mental Health Tribunal, Melbourne, Australia

    Michelle Taylor-Sands

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Bowman-Smart, H., Taylor-Sands, M. Fetal information as shared information: using NIPT to test for adult-onset conditions. Monash Bioeth. Rev. 39 (Suppl 1), 82–102 (2021). https://doi.org/10.1007/s40592-021-00142-4

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