What is a Meaningful Result? Disclosing the Results of Genomic Research in Autism to Research Participants

European Journal of Human Genetics, Vol. 18, No. 8, pp. 867-871, 2010

20 Pages Posted: 30 Nov 2011

See all articles by Fiona A. Miller

Fiona A. Miller

University of Toronto - Institute of Health Policy, Management and Evaluation; Centre for Sustainable Health Systems

R Hayeems

affiliation not provided to SSRN

Jessica Bytautas

University of Toronto - Dalla Lana School of Public Health

Date Written: 2010

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 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 non-specific. 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 by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.

Keywords: research ethics, duty to disclose, genetics, genomics, research results, autism, psychiatric genetics

Suggested Citation

Miller, Fiona A. and Hayeems, R and Bytautas, Jessica Peace, What is a Meaningful Result? Disclosing the Results of Genomic Research in Autism to Research Participants (2010). European Journal of Human Genetics, Vol. 18, No. 8, pp. 867-871, 2010, Available at SSRN: https://ssrn.com/abstract=1966125

Fiona A. Miller (Contact Author)

University of Toronto - Institute of Health Policy, Management and Evaluation ( email )

155 College Street
Suite 425
Toronto, Ontario M5T 3M6
Canada
416 978-3703 (Phone)

Centre for Sustainable Health Systems ( email )

155 College Street
Toronto, Ontario M5T 3M6
Canada

R Hayeems

affiliation not provided to SSRN

Jessica Peace Bytautas

University of Toronto - Dalla Lana School of Public Health ( email )

Toronto, Ontario
Canada

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