ArticleAmerican journal of medical genetics. Part A2012
Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.
Article in American journal of medical genetics. Part A, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 59 papers, 4 of them syntheses that pooled it.
What it found
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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.
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Who cites it
59 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- The Effectiveness of Adaptations for Online Remote Public Deliberation Across Three Continents: Mixed Methods Study.Journal of participatory medicine · 2025Article
- Bridging community-engaged research and implementation science methods to advance public health practice.Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2025Review
- "My Blood, You Know, My Biology Being out There…": Consent and Participant Control of Biological Samples.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Article
- Promoting Inclusive Recruitment: a Qualitative Study of Black Adults' Decision to Participate in Genetic Research.Journal of urban health : bulletin of the New York Academy of Medicine · 2022Article
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- Lay understandings of drug-gene interactions: The right medication, the right dose, at the right time, but what are the right words?Clinical and translational science · 2022Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research.Field methods · 2021Article
- Hmong participants' reactions to return of individual and community pharmacogenetic research results: "A positive light for our community".Journal of community genetics · 2021Article
- The reported impact of public involvement in biobanks: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Willingness of women to participate in obstetrical and pediatric research involving biobanks.Journal of community genetics · 2020Article
- Article
- Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review.International journal of environmental research and public health · 2019Review
- Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
To be respectful of the public, biobank guiding principles and operations should be responsive to and inclusive of the values and beliefs of their participants. In an effort to increase knowledge and inform institutional policies, we conducted a deliberative engagement of individuals from two healthcare facilities in South Side Chicago that serve different socioeconomic communities to consider biobank policies regarding return of research results. We recruited primary caregivers of children receiving care at either a Federally Qualified Health Center or a university-based practice to attend two full-day deliberative engagement sessions, which included four educational presentations followed by focus group discussions. Surveys were administered to assess attitudes before and after the engagement, and an evaluation was conducted to assess the deliberative engagement process. All 45 participants self-identified as African-American. Focus group themes included: (1) overall interest in biobank participation, broad consent, and recontact; (2) root causes of distrust and potential biobank strategies to facilitate trust; (3) perceived positive and negative aspects of receiving research results; and (4) strong interest in receiving and managing their children's research results. Survey data indicated the same degree of interest in receiving results about themselves as about their children. Pre- and post-session findings showed mainly non-significant attitudinal changes in level of interest in biobank participation and return of research results, although there was a decrease in level of concern regarding identification from research data. Our findings reveal shared community insights important in facilitating relationships and policy discussions between biobank researchers and research participants.
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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.