Suchergebnisse

<b><i>Background:</i></b> 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. <b><i>Methods:</i></b> Working with Private Access™ Inc., a pioneer in patient-centric web solutions, we created and pilot tested a dynamic informed consent simulation, paired with an educational website, focusing on consent for research utilizing DBSs in Michigan's BioTrust for Health. <b><i>Results:</i></b> Out of 187 pilot testers recruited in 2 groups, 137 completed the consent simulation and exit survey. Over 50% indicated their willingness to set up an account if the simulation went live and to recommend it to others. Participants raised concerns about the process of identity verification and appeared to have little experience with sharing health information online. <b><i>Conclusions:</i></b> Applying online, dynamic approaches to address the consent challenges raised by biobanks with legacy sample collections should be explored, given the positive reaction to our pilot test and the strong preference for active consent. Balancing security and privacy with accessibility and ease of use will continue to be a challenge.

<b><i>Introduction:</i></b> To date scientists and religious leaders have not yet engaged in sustained face-to-face conversation concerning precision public health-related genetic technologies. <b><i>Objectives:</i></b> To elucidate areas of commonality and divergence in scientists' and religious leaders' views of precision genetic technologies, and extract lessons conveyed by religious leaders to scientists, and scientists to religious leaders through participatory dialogue. <b><i>Methods:</i></b> Six 1.5-h dialogue sessions were held between 6 religious leaders, 8 University of Michigan scientists, and 3 additional public health/genetic counseling graduate students between October 2016 and September 2017, followed by an open conference at the Ann Arbor Public Library (<i>n</i> = 46). Statements were organized into thematically arranged duets comparing views of scientists and religious leaders. Duets were further ordered into interpretive levels. Comparative techniques were used to assure category agreement and face validity. <b><i>Results:</i></b> The analysis yielded 20 duets and 3 interpretive levels (expositional; implications and consequences; and integrative, bridging concepts). Scientists emphasized the value of epigenetic testing for health promotion, and cost saving for some forms of early genetic testing for adult-onset conditions. Religious leaders stressed care for an individual's willingness to change over technical fixes for behavioral conditions and, together with public participants, the importance of allocating money for societal needs. Both expressed caution on the use of nuclear transfer for mitochondrial DNA replacement and secondary uses of genetic data. Lay conference participants pointed towards a middle ground on the release of genetically edited mosquitoes for disease eradication. <b><i>Discussion:</i></b> Scientists stressed the value of professional guidance; religious leaders listened to family needs. Dialogues met four literature-based criteria for stakeholder involvement in deliberative processes. <b><i>Conclusion:</i></b> While scientists and religious leaders differ in their points of emphasis and faith orientations (professional competency versus drawing on compassion), they can successfully collaborate in reaching mutual understanding and specific areas of agreement on precision genetic technologies relating to public health.