ArticleJournal of community genetics2014
Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.
Article in Journal of community genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Improving Public Trust in Biobanking: Roundtable Discussions from the 2021 ISBER Annual Meeting.Biopreservation and biobanking · 2023Article
- Perspectives from a Predominantly African American Community about Biobank Research and a Biobank Consent Form.Ethics & human research · 2022Article
- When Not to Ask: A Defense of Choice-Masking Nudges in Medical Research.Journal of health care law & policy · 2022Article
- Citizens, Research Ethics Committee Members and Researchers' Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- Factors associated with participation by African Americans in a study of the genetics of glaucoma.Ethnicity & health · 2019Article
- Engaging a state: Facebook comments on a large population biobank.Journal of community genetics · 2017Article
- Community Perceptions of Biobanking Participation: A Qualitative Study among Mexican-Americans in Three Texas Cities.Public health genomics · 2017Article
- Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.BMC medical ethics · 2016Review
- A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Differences in preferences for models of consent for biobanks between Black and White women.Journal of community genetics · 2016Article
- National survey and community advisory board development for a bipolar disorder biobank.Bipolar disorders · 2015Article
- Increasing participation in genomic research and biobanking through community-based capacity building.Journal of genetic counseling · 2015Article
- Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois.Journal of genetic counseling · 2015Article
- Public trust in health information sharing: implications for biobanking and electronic health record systems.Journal of personalized medicine · 2015Article
- Testing an online, dynamic consent portal for large population biobank research.Public health genomics · 2015Article
- 'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank.Journal of community genetics · 2014Article
- Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.Journal of community genetics · 2014Article
- Newspaper coverage of biobanks.PeerJ · 2014Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
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.
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.