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Genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven(More)
OBJECTIVE To investigate to what extent and why new rheumatology patients access medical information online prior to first appointments and secondarily to ask whether they discuss information gained from the Internet with physicians. METHODS Research was conducted in a teaching rheumatology clinic with a nonrandom sample of 120 English-speaking adults(More)
To determine factors associated with breastfeeding in rural communities. We combined qualitative and quantitative data from the Family Life Project, consisting of: (1) a longitudinal cohort study (N = 1292) of infants born September 2003–2004 and (2) a parallel ethnographic study (N = 30 families). Demographic characteristics, maternal and infant health(More)
Effective translational biomedical research hinges on the operation of 'biobanks,' repositories that assemble, store, and manage collections of human specimens and related data. Some are established intentionally to address particular research needs; many, however, have arisen opportunistically, in a variety of settings and with a variety of expectations(More)
Biobanks require new governance models that address their ethical and regulatory challenges. One model relies on stewardship of specimens throughout their life course. Here, we discuss findings from our survey of 456 U.S. biobank managers that addressed whether and how biobanks steward their specimens. The findings reveal that most biobanks do not create(More)
In the debate about whether to return individual genetic results to research participants, consideration of the nature of results has taken precedence over contextual factors associated with different study designs and populations. We conducted in-depth interviews with 24 individuals who participated in a genotype-driven study of cystic fibrosis: 9 of the(More)
G enomic biobanks—repositories of human DNA and/or associated data, collected and maintained for biomedical research— present ethical challenges different from those traditionally associated with medical research. Historically, when researchers obtained and used tissue samples, it was for defi ned purposes and the nature of the research was disclosed to(More)
BACKGROUND Increasing the engagement of racial and ethnic minorities in genomic research may help alleviate health disparities. This paper examines community perceptions of the relationships between race, genes, environment, and health disparities, and it discusses how such perceptions may influence participation in genomic research. METHODS We conducted(More)
OBJECTIVES Biobanks - collections of human biological specimens stored for future research use - are crucial for biomedical advancement. One of the most common ways that biobanks acquire specimens is to obtain residual or "leftover" samples originally collected for clinical care from hospitals, clinical laboratories and pathology departments. Little is(More)
This study evaluates the psychometric properties and criterion validity of the Religious Social Support (RSS) Scale in a diverse, representative community sample of new mothers (N = 1,156). Results indicated that two factors best represented the RSS. Criterion validity was established by demonstrating that the RSS was associated with relational and health(More)