Genetic risk and reproductive decisions: Meta and counter narratives

Abstract

People with a family history of hereditary disease can dispute the common assumption that genetic risk must be contained at all costs. Whilst not averse to undergoing predictive genetic testing, their decisions regarding reproduction can be controversial and may appear to be unethical. In this article three narratives on reproductive decisions by people at risk of Huntington's disease reveal that neither the lay person's ethical considerations on reproductive choice nor the resistance he or she may display toward dominant narratives on risk containment are straightforward. The informants' accounts are examined as counter narratives of resistance against the backdrop of a dominant meta-narrative on genetic risk, yet they raise the question of whether people can truly speak outside the systematised productions of knowledge that are formative of their social realities.

Keywords:

• genetics
• risk
• Huntington's disease
• reproduction
• ethics
• narrative

Notes

1. PhD conducted in 2000–2005. Data were collected in 2001.

2. Although technically it is now referred to as ‘presymptomatic’ (Human Genetics Society of Australasia 2008), I retain the older term in view of how informants considered the predictive value of the test for planning the future.

3. Interested readers can find details in Decruyenaere et al. 2007 and Stern et al. 2002.

4. Adoption is no longer granted to individuals at risk or who are gene-positive for HD (Tyler 1996).

5. Rita's interview was not audio-taped. The informant's own words are reproduced here in italics.