Choice, autonomy and eugenics: Thoughts on the HGC's report on preconception genetic testing and screening

Abstract

As highlighted in BioNews, in early April 2011 the UK's Human Genetics Commission (HGC) published a report supporting preconception genetic testing and screening (1). Preconception screening, which can be broadly described as identifying carriers of genetic mutations to inform reproductive decision-making for the person tested or his/her relatives, is well established in some jurisdictions but relatively unknown in the UK. The proposals outlined in the report could be argued to be merely an extension of established principles of genetic testing in pregnancy to those who are not yet pregnant. The rationale for this extension is that it will increase people's options and choices, enhancing reproductive autonomy. But large-scale screening of young people previously unaware of such testing will give rise to new issues. This means Dr Callum MacKellar was right to question the ethics of screening in his recent BioNews Commentary. But I think that Dr MacKellar hasn't quite hit the mark with his criticism. His concerns can be divided into two broad areas: (i) whether preconception testing is eugenic; and (ii) that preconception testing necessarily entails selecting against children. Taking his first concern, Dr MacKellar does not explicitly state whether he believes the report's recommendations will lead to eugenic practices, although he does seem to imply they may contravene some EU legal instruments if put into practice. But if such an interpretation is sound, it would also mean most current prenatal diagnosis also amounts to such a contravention. It may be more helpful to examine what might be wrong with 'negative eugenics' (that is, discouraging couples from having a particular child).