International views on sharing incidental findings from whole genome research

3rd June 2014

Anna’s presentation was a part of the program “Returning results: Ethical and Leagal Issues” which was a joint session between the European Society of Human Genetics (ESHG) and the European Meeting on Psychosocial Aspects of Genetics (EMPAG).

Abstract:

Whilst genome-wide sequencing in a research setting may be used to explore the genetic basis of a phenotype it also offers the chance to opportunistically screen for additional results unrelated to the research project but relevant to the participants’ future medical health (termed ‘incidental fin- dings’, IFs).There is a wealth of medical and ethics literature supporting the feedback of IFs, yet there are limited empirical work offering a voice from both professional and public stakeholders directly affected by this.

A cross-sectional, web-based survey investigated the attitudes of 6944 individuals from across 91 countries towards searching for and sharing IFs. Participants inlucded 4961 members of public, 533 genetic health professionals, 843 non-genetic health professionals and 607 genomic researchers.

Eighty percent of participants believed that IFs from sequencing studies should be made available to research participants if they want them. Treatability and perceived usefulness of the data were important with 98% personally interested in learning about life-threatening conditions that were preventable. However, only 31% of participants thought genomic researchers should actively search for IFs that were not relevant to their research study. Genetic health professionals were the most likely to take this view (OR = 3.09, CI 2.23-4.28, P < 0.0001). This may be due to their appreciation of the complexities involved in translating genomic data in the clinic. Participants felt that genomic researchers should be able to focus on their research question without being forced to actively search for IFs, potentially at the expense of their study.

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Citation:

Middleton A, Parker M, Bragin E, Wright C, Firth H, Hurles M on behalf of the DDD Study (2014) International views on sharing incidental findings from whole genome research. European Society Human Genetics conference. Milan, Italy, 31 May - 3 June. Spoken presentation at joint ESHG/EMPAG session rather than smaller group session.