What is a meaningful result? Disclosing the results of genomic research in autism to research participants.

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 resear

SUBMITTER: Miller FA 

PROVIDER: S-EPMC2987386 | biostudies-literature | 2010 Aug

REPOSITORIES: biostudies-literature