Introduction Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results.
Methods The authors used a mixed-method approach in order to study parents' attitudes towards the return of research results regarding themselves and their children. Participants attended four 2-h, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre-engagement and post-engagement surveys.
Results The authors recruited 45 African-American adults whose children received medical care at two healthcare facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enrol themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre-engagement and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared.
Discussion Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes.
- genetic research
- return of results
- deliberative engagement
- allocation of organs/tissues
- research ethics
- genetic screening/testing
- newborns and minors
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Funding National Institutes of Health, National Center for Research Resources. Grant number: 3UL1RR024999-04S1.
Competing interests None.
Ethics approval Approval provided by the University of Chicago IRB and Northwestern University IRB.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The data are still being examined by the researchers. Once the research is complete, the authors will share data as required by the National Institutes of Health.