ArticleJournal of medical ethics2012
Attitudes of African-American parents about biobank participation and return of results for themselves and their children.
Article in Journal of medical ethics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 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
24 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- Perceptions, attitudes, and concerns of underrepresented groups regarding the use of big data in children and young people's healthcare research - A systematic literature review.PLOS digital health · 2026Article
- Capturing attitudes towards research and data sharing in down syndrome (CARDS-DS): Piloting a novel parent-report measure.Social sciences & humanities open · 2026Article
- Return of health research findings in Nigeria-perspective of potential research participants.BMC medical ethics · 2026Article
- Return of health research findings in Nigeria-perspective of potential research participants.Research square · 2025Article
- Parent attitudes towards data sharing in developmental science.Open research Europe · 2023Article
- Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?Paediatric and perinatal epidemiology · 2022Article
- Implementing genomic screening in diverse populations.Genome medicine · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations.Journal of community genetics · 2020Article
- Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.BMC medical informatics and decision making · 2018Article
- Barriers and Strategies to Participation in Tissue Research Among African-American Men.Journal of cancer education : the official journal of the American Association for Cancer Education · 2017Article
- Returning Results: Let's Be Honest!Genetic testing and molecular biomarkers · 2017Article
- Development and Validation of the Biomedical Research Trust Scale (BRTS) in English and Spanish.Journal of empirical research on human research ethics : JERHRE · 2016Article
- Parental perspectives on consent for participation in large-scale, non-biological data repositories.Life sciences, society and policy · 2016Article
- How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Genetic research participation in a young adult community sample.Journal of community genetics · 2014Article
- Development and validation of the biobanking attitudes and knowledge survey (BANKS).Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2014Article
- Using Mixed Methods to Examine Perceptions and Willingness to Participate in Bio-specimen Banking in Diverse Asian Americans.Journal of community medicine & health education · 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
2 authors.
Funding
Abstract
introductionBiobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results.
methodsThe authors used a mixed-method approach in order to study parents' attitudes towards the return of research results regarding themselves and their children. Participants attended four 2-h, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre-engagement and post-engagement surveys.
resultsThe authors recruited 45 African-American adults whose children received medical care at two healthcare facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enrol themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre-engagement and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared. DISCUSSION: Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes.
Indexed as
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.