Ethical implications of sharing incidental findings: preliminary findings from an International study
10th April 2013
From conference program:
“Empirical data on the attitudes, values and beliefs of research participants towards receiving results from whole genome/exome sequencing studies is limited. There have been several small-scale qualitative interview studies as well as discussion about the feedback of genomic results within the context of biobanks and an evaluation of the attitudes of genetic health professionals. Such research has emphasised the need for further and larger scale studies in this area. Although much has been written about incidental findings in medical imaging, to our knowledge, tehre are no large-scale (n=1000+) mixed-methods studies that clearly evaluate attitudes towards the sharing of genomic incidental findings within a research or clinical setting. To address this gap, we have designed a questionnaire and interview study to ascertain the views of families recruited to the DDD project, genomic researchers, genetic health professionals, laboratory staff and members of the public; as the questionnaire is online it is not limited by geography and thus peopel participating may be from anywhere in the world. The questionnaire is avaiable at http://www.genomethics.org; film and animation are used to explain the concepts needed to answer the questions. The first 2,000 completed questionnaires have been analysed and data from this subset will be presented. Attitudinal differences – that exist between genomic researchers, health professionals and lay members of the public – will be shared.”
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