Preconception testing and screening: Has the HGC covered all the bases?

10 November 2014

Has the Human Genetics Commission (HGC)'s recent report on population-wide preconception genetic testing and screening (1) convincingly demonstrated that this practice raises 'no specific ethical, legal or social principles' that would make population screening unacceptable? In BioNews 606, I critiqued Dr Callum MacKellar's commentary on the report (2). At the end of my commentary, I alluded to issues I think the HGC didn't address in enough depth. This doesn't mean that preconception screening is unacceptable, but we should pay more attention to these issues before introducing population-wide preconception screening. I'm concerned about three things. First, the HGC has adopted an 'apple pie' version of reproductive autonomy, viewing this concept as an intrinsic good (an issue Dr MacKellar also recognises). Second, the Commission has failed to justify why it has decided to offer screening to mature school students. Third, the HGC has glossed over the implications of communicating screening results to family members. The HGC states that 'respect for reproductive autonomy implies that a range of reproductive options should be available' (p1). They claim their proposals for population screening in young people are an extension of screening pregnant women that will increase choice and enhance reproductive autonomy. This seems to suggest that reproductive autonomy is an inherent good. I don't wish to underplay the right of women or couples to make informed and free decisions before and during pregnancy. But there is significant debate in bioethics and social science about the nature of and appropriate limits to reproductive autonomy, for example the myriad discussions over how women's decisions are influenced. The HGC report seems not to recognise these nuances.