R. Jean Cadigan

Learn 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)
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)
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)
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)
PURPOSE Genotype-driven research recruitment complicates traditional study roles and may leave those recruited worried about unwelcome surprises from their DNA. This study investigated the ways that individuals experience genotype-driven recruitment, and conceptualize their roles as research participants. METHODS Individual interviews were conducted with(More)
PURPOSE To explore the views of university-based investigators conducting genetic research with human specimens regarding ownership and retention of specimens, and knowledge of related institutional review board and university policies. METHODS Data were collected in three phases: a qualitative pilot study of 14 investigators; a web-based survey taken by(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)