Dataset Information

Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.

ABSTRACT: 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 de-identified samples for health research use. The Michigan BioTrust for Health includes approximately 4 million unconsented retrospective samples collected as early as 1984 and prospective samples added since the fall of 2010 with blanket parental consent. We engaged Michigan citizens to ascertain public attitudes, knowledge, and beliefs about the BioTrust and informed consent. A convenience sampling of 393 participants from communities around the state of Michigan (oversampling for minority populations) participated in meetings addressing newborn screening, the BioTrust and informed consent, yielding quantitative and qualitative survey and discussion data. Participants affirmed the principle of voluntary informed participation in research and advocated for greater public awareness of the existence of the BioTrust. Most expressed support for the use of DBS for research and a desire for greater involvement in granting permission for research use. Opinions varied as to which specific research uses were acceptable. Participants indicated a desire for greater engagement, public awareness, and more active decision making on the part of biobank participants and parents. Diversity of opinion over which research areas were deemed acceptable problematizes the blanket consent model that currently applies to the BioTrust's prospective DBS collection and that could become the new norm for research using de-identified data under proposed changes to the Common Rule.

SUBMITTER: Thiel DB

PROVIDER: S-EPMC3955459 | biostudies-other | 2014 Apr

REPOSITORIES: biostudies-other

ACCESS DATA

Publications

Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.

Thiel Daniel B DB Platt Tevah T Platt Jodyn J King Susan B SB Kardia Sharon L R SL

Journal of community genetics 20130727 2

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 de-identified samples for health research use. The Michigan BioTrust for Health includes approximately 4 million unconsented retrospective sampl ...[more]

PMID: 23893769

Similar Datasets

Project description:ImportanceIn 2020, Michigan Medicaid implemented a new work requirement policy for enrollees in the Healthy Michigan Plan (HMP), the state's expanded Medicaid program. Under the policy, enrollees would be required to report 80 hours of work or other qualifying activities each month or obtain an exemption to maintain health insurance coverage.ObjectiveTo assess the experiences of health navigators (and beneficiaries by proxy) with the implementation of Michigan's Medicaid work requirement.Design setting and participantsThis qualitative study included health navigators who participated in 11 focus groups from September to December 2020. Focus group questions addressed topics related to implementation and communication of the HMP work requirement policy. A survey was administered to capture background information, assess readiness to assist with navigation, and assess the quality of the state's communication about the policy.Main outcomes and measuresThe main outcomes were general understanding of policy components, communications about the policy, navigation of the exemption process, navigation of the reporting process, and beneficiaries' ability to comply with the policy.ResultsOf 50 health navigators who participated in the focus groups, 44 (88.0%) responded to the survey and 43 provided demographic information (mean [SD] age, 44.0 [10.5] years). All 43 had at least some college or vocational education, with 27 (62.8%) reporting a 4-year degree or higher, and they resided in geographic regions across Michigan. Navigators indicated that they felt prepared to assist HMP enrollees navigate work requirements. Communication to beneficiaries regarding the new policy was viewed as an improvement compared with traditional Medicaid communications. However, the complex policy was potentially difficult for beneficiaries to understand. Limited language options besides English created barriers for some enrollees. Exemptions were confusing for beneficiaries owing to the numerous categories and sometimes vague guidelines. Those who used the online reporting system generally found the platform to be user-friendly. Navigators expressed concern regarding HMP enrollees' ability to report compliance with work requirements owing to barriers with internet access, telephone access, language challenges, and computer literacy.Conclusions and relevanceIn this qualitative analysis of health navigators in Michigan, respondents reported overall positive feedback about many of the implementation and communication strategies, including human-centered design, automatic exemptions, and use of state administrative data to assess whether beneficiaries were in compliance with the policy; however, barriers to reporting remained for enrollees. The findings suggest that state agencies should seek to reduce administrative barriers and apply a human-centered design approach to alleviate risk of unnecessary loss of Medicaid benefits.

Project description:South Africa (SA) is reforming its health system in preparation for an anticipated national health insurance (NHI) scheme that aims to improve the delivery of affordable, equitable, accessible health care. Public health (PH) language is explicit in the policy and skilled PH professionals would be expected to play a key role in its implementation. In South Africa, training of doctors as Public Health Medicine (PHM) specialists is funded by the state, yet there are few positions for PHM specialists in the health services. We explored stakeholders' perspectives about this absence, and their views on PHM specialist' roles and contribution in an era of health reform. A qualitative study was conducted in 2012-13, using in-depth interviews with thematic analysis, which elicited perspectives of 31 key stakeholders nationally reflecting diverse employer and institutional backgrounds. While some were surprised by the absence of PH professionals in SA's health system, most agreed the reason was due to factors internal to the profession, such as its low profile and uncertain identity. External factors such as legislation and political preferences for health managers impacted on the employment of PH professionals. However, given the competencies required to implement an ambitious restructuring of the health sector, all believed that PH and PHM personnel were vital. In view of the health system's dominant curative orientation, embedding PH personnel in the services should ensure that health protection, promotion and prevention strategies will inform health priorities. This study, the first known from a low and middle-income country, contributes to the international literature about the identity and roles of PHM physicians, who are versatile professionals with broad skills-sets. In SA, through consultation with health sector employers about potential roles, curricular redesign and trainee recruitment, PHM can graduate fit-for-purpose specialists to work in a range of institutions to address health system reform.

Dataset Information

Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.

Publications

Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets