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: Purpose:We describe parental attitudes toward the return of targeted and incidental genomic research results in the setting of high-risk pediatric cancer and inherited childhood diseases.Methods:A validated 36-item questionnaire was mailed to participants in three large-scale genome research consortia examining attitudes toward receipt of genomic research results and the influence of certainty, severity, and onset of the condition, in addition to responsibilities to extended family and provision of results even after death of the proband.Results:Of the 563 participants who were sent questionnaires, 362 (64%) responded. Most of them stated a positive right to receive results related to the target condition (97%) or to incidental findings (86%); no difference was found in results between participants with cancer and those with orphan diseases. Furthermore, 92% indicated that genomic research for childhood-onset conditions should occur. The majority wanted incidental results predicting susceptibility even to untreatable fatal conditions (83%), to multiple conditions (87%), or to those with uncertain impact (70%). Most felt sibling genomic results showing serious conditions, whether treatable (93%) or not (88%), and/or results discovered after death of the proband should be shared with family (74%).Conclusion:Many parents of children in pediatric genomic research indicated a strong desire to receive a broader range of results than is described in consensus recommendations. Clear delineation of what will be offered should be established at the time of consent.Genet Med advance online publication 16 January 2014Genetics in Medicine (2014); doi:10.1038/gim.2013.201.Genetics in medicine: official journal of the American College of Medical Genetics 01/2014; · 3.92 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;
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ABSTRACT: Background: Population ancestry-based differences exist in genetic risk for many kidney diseases. Substantial debate remains regarding returning genetic test results to participants. African-Americans (AAs) and European-Americans (EAs) at risk for end-stage kidney disease were queried for views on the value and use of genetic testing in research. Methods: A standardized survey regarding attitudes toward genetic testing was administered to 130 individuals (64 AA, 66 EA) with first-degree relatives on dialysis. Fisher's exact test was used to assess differences in participant attitudes between population groups. Results: Mean (SD) age of surveyed AAs and EAs was 45.5 (12.8) and 50.5 (14.4) years, respectively (p = 0.04), with similar familial relationships (p = 0.22). AAs and EAs wished to know their test results if risk could be: (1) reduced by diet or exercise (100 and 98%, p = 0.99); (2) reduced by medical treatment (100 and 98%, p = 0.99), or (3) if no treatments were available (90 and 82%, p = 0.21). If informed they lacked a disease susceptibility variant, 87% of AAs and 88% of EAs would be extremely or pretty likely to inform family members (p = 0.84). If informed they had a disease susceptibility variant, 92% of AAs and 89% of EAs would be extremely or pretty likely to inform their family (p = 0.43). Conclusions: Attitudes toward obtaining and using genetic test results for disease in research contexts were similar in AAs and EAs at risk for end-stage kidney disease. A substantial majority would want information regardless of available treatments and would share the information with the family. These results have important implications for patient care, study design and the informed consent process. © 2013 S. Karger AG, Basel.American Journal of Nephrology 11/2013; 38(6):453-457. · 2.62 Impact Factor