Direct to consumer personal genomic testing and trust: a comparative focus group study of lay perspectives in Germany, Israel, the Netherlands and the UK

In this chapter, we explore lay perspectives on direct to consumer personal genomic testing (DTC PGT) in Germany, Israel, the Netherlands and the UK with regard to acceptance of DTC PGT, its perceived utility, its benefits and risks and its regulation and how these aspects relate to trust. We conducted 16 focus groups (four per country, participants n=99), following a structured discussion guideline, and analysed the transcripts using qualitative content analysis. The analysis we present in this chapter is touching upon the topics rather briefly and is meant to be the starting point for further analysis of the rich and extensive material.

We identified variations in acceptance and concerns regarding DTC PGT based on aspects relevant to building trust. We found that, with the exception of participants in Israel, scepticism was very high. Privacy and data protection, including the possibility of discrimination, were a near-universal concern in all four countries. Regulation of the market was suggested to be necessary to protect consumers from possible negative consequences. German, Dutch and UK participants preferred provision of genetic testing from within the regular, trusted public health care system. Israeli participants were more open to commercial provision of PGT.