International views on sharing incidental findings from whole genome research. A. Middleton1, M. Parker2, E. Bragin1, CF. Wright1, HV. Firth1, M. Hurles1 on behalf of the DDD study 1) Wellcome Trust Sanger Institute, Cambridge, Cambridgeshire, United Kingdom; 2) Ethox Centre, University of Oxford, Oxford, United Kingdom.
Whilst whole genome/exome 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 findings, IFs).There is a wealth of medical and ethics literature supporting the feedback of IFs, yet there are limited empirical studies offering a voice from both professional and public stakeholders directly affected by this. The ACMG recommendations on sharing IFs offer advice for the clinic; could these be applied to research sequencing, where scientists may have different obligations and duties, for example to funders? We have gathered the attitudes of more than 5000 people from across the world (e.g. UK, USA, Canada, Australia, S.Africa, Brazil, The Netherlands, Germany, India, Russia, China etc) towards opportunistic genomic screening in a research setting. We created a novel quantitative online survey (www.genomethics.org) to gather attitude data and integrated 10 films within this that describe various ethical issues raised by genome sequencing in a research setting. Genetic health professionals (including clinical geneticists, genetic counsellors and diagnostic lab staff) (53%) were the least likely to think information relating to life-threatening, untreatable conditions should be shared, compared to the public (69%), genomic researchers (72%) and other health professionals (77%) (p<0.0001). All groups, apart from genetic health professionals, thought that if research participants wanted it, they should be able to receive their raw sequence data (p<0.0001). When asked to consider whether genomic researchers should actively search for IFs not relevant to their original research question, the majority of all groups said no (p<0.0001). All stakeholders valued the rights of research participants to have access to incidental genomic data. However, genetic health professionals were the most conservative. This may be due to their appreciation of the complexities involved in translating genomic data in the clinic. There is much anecdotal support in the literature for sharing IFs in a research setting, and our participants agreed with this principle. However, they also thought that genomic researchers should be able to focus on the aims of their study without being forced to actively search for IFs, potentially at the expense of attaining those aims.
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