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PURPOSE Some large population biobanks that house biospecimens and health information for research seek broad consent from participants, whereas others reconsent for specific new studies. Understanding research participants' attitudes and preferences about broad and narrow consent may improve recruitment, retention, and public support. METHODS An online(More)
BACKGROUND The interpersonal, dialogic features of social networking sites have untapped potential for public health communication. We ran a Facebook advertising campaign to raise statewide awareness of Michigan's newborn screening and biobanking programs. OBJECTIVE We ran a Facebook advertising campaign to stimulate public engagement on the complex and(More)
OBJECTIVE To measure public trust in a health information sharing in a broadly defined health system (system trust), inclusive of health care, public health, and research; to identify individual characteristics that predict system trust; and to consider these findings in the context of national health initiatives (e.g., learning health systems and precision(More)
Biobanks raise challenges for developing ethically sound and practicable consent policies. Biobanks comprised of dried bloodspots (DBS) left over from newborn screening, maintained for long-term storage, and potential secondary research applications are no exception. Michigan has been a leader in transforming its DBS collection, marketing its biobank of(More)
BACKGROUND Michigan's BioTrust for Health, a public health research biobank comprised of residual dried bloodspot (DBS) cards from newborn screening contains over 4 million samples collected without written consent. Participant-centric initiatives are IT tools that hold great promise to address the consent challenges in biobank research. METHODS Working(More)
Large population biobanks, important resources for genomic research, also present ethical challenges. The Michigan BioTrust for Health makes dried bloodspots (DBS) leftover from newborn screening, including ~4.5 million collected before 2010 without written consent, available for health research. Absent prospectively gathered consent and/or current(More)
Biobanks are made all the more valuable when the biological samples they hold can be linked to health information collected in research, electronic health records, or public health practice. Public trust in such systems that share health information for research and health care practice is understudied. Our research examines characteristics of the general(More)
This paper provides a review of some previously identified requirements of a learning health system, a post hoc analysis of narrative artifacts describing a learning health system, and some new potential requirements of a learning health system. Engaging a transdisciplinary group of researchers and health care practitioners, we used a method of group(More)
One of the significant modifications to the Common Rule is the requirement that prospective participants be given information sufficient for a "reasonable person." However, research is limited on what types of information patients, caregivers, and providers consider "key information." Although certain aspects of informed consent (IC) may be considered(More)
Scholarship on newborn screening, dried bloodspot retention, and large population biobanking call consistently for improved public engagement. Communication with participants likely occurs only in the context of collection, consent, or notification, if at all. We ran an 11-week advertising campaign to inform Michigan Facebook users unlikely to know that(More)