ArticlePublic health genomics2011
Public perspectives regarding data-sharing practices in genomics research.
Article in Public health genomics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 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
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- Article
- Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People.JMIR formative research · 2024Article
- Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.AJOB empirical bioethics · 2024Article
- The reuse of genetic information in research and informed consent.European journal of human genetics : EJHG · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.BMC medical genomics · 2023Article
- Patients' knowledge, preferences, and perspectives about data protection and data control: an exploratory survey.Frontiers in pharmacology · 2023Article
- Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research.BMC medical ethics · 2022Article
- The human genetic epidemiology of COVID-19.Nature reviews. Genetics · 2022Review
- The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Who's afraid of genetic tests?: An assessment of Singapore's public attitudes and changes in attitudes after taking a genetic test.BMC medical ethics · 2022Article
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- US Privacy Laws Go Against Public Preferences and Impede Public Health and Research: Survey Study.Journal of medical Internet research · 2021Article
- Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.Journal of patient experience · 2020Article
- A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England.Public understanding of science (Bristol, England) · 2020Article
- German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192).Frontiers in genetics · 2020Article
- Article
- Willingness to Participate in Health Information Networks with Diverse Data Use: Evaluating Public Perspectives.EGEMS (Washington, DC) · 2019Article
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
backgroundGenomics research data are often widely shared through a variety of mechanisms including publication, meetings and online databases. Re-identification of research participants from sequence data has been shown possible, raising concerns of participants' privacy.
methodsIn 2008-09, we convened 10 focus groups in Durham, N.C. to explore attitudes about how genomic research data were shared amongst the research community, communication of these practices to participants and how different policies might influence participants' likelihood to consent to a genetic/genomic study. Focus groups were audio-recorded and transcripts were complemented by a short anonymous survey. Of 100 participants, 73% were female and 76% African-American, with a median age of 40-49 years.
resultsOverall, we found that discussants expressed concerns about privacy and confidentially of data shared through online databases. Although discussants recognized the benefits of data-sharing, they believed it was important to inform research participants of a study's data-sharing plans during the informed consent process. Discussants were significantly more likely to participate in a study that planned to deposit data in a restricted access online database compared to an open access database (p < 0.00001).
conclusionsThe combination of the potential loss of privacy with concerns about data access and identity of the research sponsor warrants disclosure about a study's data-sharing plans during the informed consent process.
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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.