Concern, pressure and lack of knowledge affect choice of not wanting to know high-risk status

The 'right not to know' one's genetic status has been increasingly more recognised in ethical and legal instruments. Yet empirical research is limited, leaving discussion on a theoretical level. There are also divergent ideas as to what extent it should be respected. In this study, we explored the clinical preconditions for disclosure of increased risk of getting diabetes in children. We included questions in the clinical 5-year questionnaire of a predictive screening for the risk of type 1 diabetes (T1DM), asking the respondents (n=7206) whether they wished to be informed of their children's potential risk status. The group of 2% of the respondents who did not want to know about risk status proved to be significantly associated to concern with natural history data (OR 4.03), lack of knowledge (OR 3.17), pressure to participate (OR 2.99) and the child's disease development (OR 2.18). We discuss whether parents'/participants' 'no' to high-risk information may call for a more nuanced response such as information and support, rather than simply respect their wish not to know. We furthermore argue that it is ethically questionable whether the parents' expressed wish not to know should prima facie override the potential benefits for their child. We conclude that this constitutes sufficient reason not to promote a default solution where people's expressed wishes not to know are taken at face value.