Attitudes of African-American parents about biobank participation and return of results for themselves and their children
ABSTRACT Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results.
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.
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.
Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes.
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ABSTRACT: Research data repositories (RDRs) are data storage entities where data can be submitted, stored, and subsequently accessed for purposes beyond the original intent. There is little information relating to non-biological RDRs, nor considerations regarding pediatric data storage and re-use. We examined parent perspectives on pediatric, non-biological RDRs. Qualitative, descriptive methods including both interviews and focus groups were used. Purposive sampling of adult participants in two provincial birth cohorts yielded 19 interviewees and 18 focus group participants (4 groups). Transcripts were analyzed by thematic content analysis. Parent research participants strongly supported the sharing of their own, and their child's, non-biological research data. Four themes emerged: that altruism has limits, that participants have ongoing privacy concerns, that some participants need the assurance of congruent values between themselves and researchers/research questions, and that opinions diverge for some governance issues. The establishment of RDRs is important and maximizes participants', researchers', and funders' investments. Participants as data donors have concerns relating to privacy, relationships, and governance that must be considered in RDR development. © The Author(s) 2014.Journal of Empirical Research on Human Research Ethics 02/2014; 10(1):88-99. DOI:10.1177/1556264614564970 · 1.22 Impact Factor
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ABSTRACT: Opposed to large nationally sponsored health initiatives or biobanks, little is known about gathering genetic samples from young adults participating in academic community-based epidemiologic studies of mental health and substance use, especially samples with a large number of minority participants. This study describes our experience of establishing a genetic arm within a longitudinal study of a cohort of young adults (mean age 29, 75 % African American, 58 % female). In total, 75 % of those interviewed in the most recent wave donated a DNA sample (31.6 % blood and 68.4 % saliva) and over 90 % provided consent for storage and sharing. Current smokers were more likely to donate a sample than nonsmokers (adjusted odds ratio (aOR) = 1.59, 95 % confidence interval (CI) = 1.14, 2.22). The odds of obtaining a saliva sample were increased for those who were former cannabis smokers and who drank more regularly, but decreased among participants with less education and a history with drug use. Fewer minorities (aOR = 0.37, 95 % CI = 0.18, 0.75; p = 0.006) and cannabis users (aOR = 0.46, 95 % CI = 0.27, 0.77) consented to sharing their sample with other investigators. Findings also illustrate there are many study parameters that are important in planning biologic collection efforts. Building strong rapport and trust with subjects, minimizing the burden involved by the respondent to obtain a biological sample, offering a choice to provide blood or saliva, and offering an incentive will increase the likelihood of obtaining a sample and, importantly, increase the opportunity to store and share the sample for the future.Journal of community genetics 06/2014; 5(4). DOI:10.1007/s12687-014-0191-3
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ABSTRACT: A recent report from the British Nuffield Council on Bioethics associated 'emerging biotechnologies' with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research. PIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction. After filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details. The state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the "deliberation to policy gap". The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.PLoS ONE 12/2014; 9(12):e113274. DOI:10.1371/journal.pone.0113274 · 3.53 Impact Factor