Abstract
Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether – and which results – to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results ‘reportable’ when results were perceived to explain cause, and answer the question ‘why;’ that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed ‘true.’ Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as ‘true’ depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is ‘genetic.’ For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.
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Acknowledgements
We are indebted to the many busy people who agreed to speak with us about their lives and work, and we also thank the Ontario Genomics Institute for funding for the project. Fiona A Miller is supported by a New Investigator Award from the Canadian Institutes of Health Research (80495). Robin Z Hayeems is supported by a CADRE Postdoctoral Fellowship from the Canadian Institutes of Health Research and the Canadian Health Services Research Foundation. Sponsors’ support for this work should not imply endorsement of the conclusions, for which the authors retain sole responsibility.
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Miller, F., Hayeems, R. & Bytautas, J. What is a meaningful result? Disclosing the results of genomic research in autism to research participants. Eur J Hum Genet 18, 867–871 (2010). https://doi.org/10.1038/ejhg.2010.34
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DOI: https://doi.org/10.1038/ejhg.2010.34
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