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Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing
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What this work says
Outgoing claims: the papers this work cites, builds on, or argues with.
inferredcites →https://doi.org/10.1002/ajmg.a.32635openalex-snapshot
Assessing the understanding of biobank participants
inferredcites →https://doi.org/10.1007/978-0-387-77282-0_6openalex-snapshot
Qualitative Data Analysis
inferredcites →https://doi.org/10.1007/s11948-004-0003-yopenalex-snapshot
Strategies for consulting with the community: The cases of four large-scale genetic databases
inferredcites →https://doi.org/10.1016/j.socscimed.2004.05.012openalex-snapshot
Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research
inferredcites →https://doi.org/10.1038/ejhg.2008.55openalex-snapshot
Population Genomics: The Public Population Project in Genomics (P3G): a proof of concept?
inferredcites →https://doi.org/10.1038/nature05911openalex-snapshot
Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls
inferredcites →https://doi.org/10.1038/ng1007-1181openalex-snapshot
The NCBI dbGaP database of genotypes and phenotypes
inferredcites →https://doi.org/10.1038/nrg2124openalex-snapshot
Share and share alike: deciding how to distribute the scientific and social benefits of genomic data
inferredcites →https://doi.org/10.1046/j.1525-1497.1999.07048.xopenalex-snapshot
Attitudes and beliefs of african americans toward participation in medical research
inferredcites →https://doi.org/10.1080/09581590701824086openalex-snapshot
Generation Scotland: consulting publics and specialists at an early stage in a genetic database's development
inferredcites →https://doi.org/10.1097/gim.0b013e31815f1e00openalex-snapshot
DNA data sharing: research participants' perspectives
inferredcites →https://doi.org/10.1097/gim.0b013e318164e4f5openalex-snapshot
Great expectations: views of genetic research participants regarding current and future genetic studies
inferredcites →https://doi.org/10.1159/000096274openalex-snapshot
Informed Consent and Subject Motivation to Participate in a Large, Population-Based Genomics Study: The Marshfield Clinic Personalized Medicine Research Project
inferredcites →https://doi.org/10.1159/000101756openalex-snapshot
Community Engagement in Genetic Research: Results of the First Public Consultation for the Quebec CARTaGENE Project
inferredcites →https://doi.org/10.1159/000167801openalex-snapshot
Engaging the Public on Biobanks: Outcomes of the BC Biobank Deliberation
inferredcites →https://doi.org/10.1371/journal.pbio.0060073openalex-snapshot
Research Ethics Recommendations for Whole-Genome Research: Consensus Statement
inferredcites →https://doi.org/10.2217/14622416.6.6.639openalex-snapshot
UK Biobank: From Concept to Reality
inferredcites →https://doi.org/10.2307/3528467openalex-snapshot
Trust: The Fragile Foundation of Contemporary Biomedical Research
What points at this work
Incoming claims: where this work appears in other papers’ reference lists and arguments.
inferred← citeshttps://doi.org/10.12688/openreseurope.15474.1zenodo-depositor-declared
Creating personas for exposome research: the experience from the HEAP project
inferred← citeshttps://doi.org/10.1002/9780470015902.a0005179.pub2openalex-snapshot
Beyond Consent: Respect for Community in Genetic Research
inferred← citeshttps://doi.org/10.1002/ajmg.a.34414openalex-snapshot
Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago
inferred← citeshttps://doi.org/10.1002/ajmg.a.38114openalex-snapshot
A qualitative study of adolescents’ understanding of biobanks and their attitudes toward participation, re‐contact, and data sharing
inferred← citeshttps://doi.org/10.1002/eahr.500028openalex-snapshot
Improving Translation and Cultural Appropriateness of Spanish‐Language Consent Materials for Biobanks
inferred← citeshttps://doi.org/10.1002/gps.5416openalex-snapshot
Returning individual‐specific results of a dementia prevalence study: insights from prospective participants living in Switzerland
inferred← citeshttps://doi.org/10.1002/jgc4.1217openalex-snapshot
Relationships of health information orientation and cancer history on preferences for consent and control over biospecimens in a biobank: A race‐stratified analysis
inferred← citeshttps://doi.org/10.1002/jgc4.1262openalex-snapshot
Public perception of predictive cancer genetic testing and research in Oregon
inferred← citeshttps://doi.org/10.1002/jvc2.501openalex-snapshot
To assess the attitudes of Irish patients attending a pigmented lesion clinic and healthcare staff employed in an academic hospital to biobanking, a quantitative study
inferred← citeshttps://doi.org/10.1007/978-1-0716-1138-8_5openalex-snapshot
Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research
inferred← citeshttps://doi.org/10.1007/978-1-4939-2428-8_22openalex-snapshot
Clinical Genetic Research 3: Genetics ELSI (Ethical, Legal, and Social Issues) Research
inferred← citeshttps://doi.org/10.1007/978-3-030-63924-2_2openalex-snapshot
Data Quality for Medical Data Lakelands
inferred← citeshttps://doi.org/10.1007/978-3-032-28873-8_10openalex-snapshot
Diversification Strategies
inferred← citeshttps://doi.org/10.1007/978-3-319-50627-2_4openalex-snapshot
Sharing Scientific Data: Moving Toward “Open Data”
inferred← citeshttps://doi.org/10.1007/978-3-319-68756-8_4openalex-snapshot
Trust as a Foundation for Research with Human Subjects
inferred← citeshttps://doi.org/10.1007/978-3-642-33116-9_5openalex-snapshot
Ownership of Biomedical Information in Biobanks
inferred← citeshttps://doi.org/10.1007/s00439-011-1042-5openalex-snapshot
Identifiability in biobanks: models, measures, and mitigation strategies
inferred← citeshttps://doi.org/10.1007/s00439-011-1065-yopenalex-snapshot
Biobanks and the phantom public
inferred← citeshttps://doi.org/10.1007/s10803-019-03990-6openalex-snapshot
Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder
inferred← citeshttps://doi.org/10.1007/s10897-014-9788-2openalex-snapshot
Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois
inferred← citeshttps://doi.org/10.1007/s10943-023-01932-2openalex-snapshot
When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes
inferred← citeshttps://doi.org/10.1007/s11019-017-9795-9openalex-snapshot
“That is why I have trust”: unpacking what ‘trust’ means to participants in international genetic research in Pakistan and Denmark
inferred← citeshttps://doi.org/10.1007/s11019-025-10276-5openalex-snapshot
Consent and its discontents: the case of UK Biobank
inferred← citeshttps://doi.org/10.1007/s11019-026-10398-4openalex-snapshot
Biobanks, the ‘diagnostic misconception’ and the distinction between altruism and reciprocity
inferred← citeshttps://doi.org/10.1007/s11121-018-0944-zopenalex-snapshot
Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science
inferred← citeshttps://doi.org/10.1007/s11301-026-00621-0openalex-snapshot
What’s in it for me? a systematic literature review on incentive mechanisms fostering users’ data sharing behavior in data ecosystems
inferred← citeshttps://doi.org/10.1007/s12687-011-0052-2openalex-snapshot
Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study
inferred← citeshttps://doi.org/10.1007/s12687-013-0146-0openalex-snapshot
Biobanking for research: a survey of patient population attitudes and understanding
inferred← citeshttps://doi.org/10.1007/s12687-013-0154-0openalex-snapshot
Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study
inferred← citeshttps://doi.org/10.1007/s12687-014-0191-3openalex-snapshot
Genetic research participation in a young adult community sample
inferred← citeshttps://doi.org/10.1007/s12687-016-0279-zopenalex-snapshot
Biobank participant support of newborn screening for disorders with variable treatment and intervention options
inferred← citeshttps://doi.org/10.1007/s12687-017-0300-1openalex-snapshot
De-identified genomic data sharing: the research participant perspective
inferred← citeshttps://doi.org/10.1007/s12687-017-0331-7openalex-snapshot
The challenges of the expanded availability of genomic information: an agenda-setting paper
inferred← citeshttps://doi.org/10.1007/s12687-018-0397-xopenalex-snapshot
Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community
inferred← citeshttps://doi.org/10.1007/s13178-018-0372-7openalex-snapshot
Sexual and Gender Minority Youth’s Perspectives on Sharing De-identified Data in Sexual Health and HIV Prevention Research
inferred← citeshttps://doi.org/10.1007/s13347-017-0268-0openalex-snapshot
Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research
inferred← citeshttps://doi.org/10.1007/s40142-013-0014-6openalex-snapshot
Biobanking: The Melding of Research with Clinical Care
inferred← citeshttps://doi.org/10.1007/s40615-017-0336-2openalex-snapshot
A Community-Driven Intervention for Improving Biospecimen Donation in African American Communities
inferred← citeshttps://doi.org/10.1016/b978-0-12-411464-7.00021-3openalex-snapshot
Application of Pharmacogenomics in Global Alzheimer’s Disease Clinical Trials and Ethical Implications
inferred← citeshttps://doi.org/10.1016/b978-0-12-824010-6.00011-3openalex-snapshot
Protection of privacy in genomic medicine
inferred← citeshttps://doi.org/10.1016/j.ajhg.2017.01.021openalex-snapshot
Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US
inferred← citeshttps://doi.org/10.1016/j.cnur.2013.09.005openalex-snapshot
Nursing and Genetic Biobanks
inferred← citeshttps://doi.org/10.1016/j.ejca.2012.05.017openalex-snapshot
Perceptions of genetic research and testing among members of families with an increased risk of malignant melanoma
inferred← citeshttps://doi.org/10.1016/j.gim.2021.09.021openalex-snapshot
The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research
inferred← citeshttps://doi.org/10.1016/j.jclinepi.2016.03.009openalex-snapshot
Active recruitment and limited participant-load related to high participation in large population-based biobank studies
inferred← citeshttps://doi.org/10.1016/j.jpsychires.2017.07.002openalex-snapshot
Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness
inferred← citeshttps://doi.org/10.1016/j.socscimed.2011.05.046openalex-snapshot
From consent to institutions: Designing adaptive governance for genomic biobanks
inferred← citeshttps://doi.org/10.1016/j.socscimed.2016.06.028openalex-snapshot
Understanding public reactions to commercialization of biobanks and use of biobank resources
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Privacy in breast cancer biobank: Chinese patients’ perceptions
inferred← citeshttps://doi.org/10.1016/j.tig.2013.02.001openalex-snapshot
Evolving approaches to the ethical management of genomic data
inferred← citeshttps://doi.org/10.1016/j.tig.2020.03.004openalex-snapshot
Are Public Repository Requirements Exacerbating Lack of Diversity?
inferred← citeshttps://doi.org/10.1016/j.xhgg.2026.100660openalex-snapshot
Underrepresented voices in a Colorado Biobank: Perspectives from focus groups on motivations, return of results, and data sharing
inferred← citeshttps://doi.org/10.1016/s0027-9684(15)30172-3openalex-snapshot
Understanding Participation by African Americans in Cancer Genetics Research
inferred← citeshttps://doi.org/10.1017/cts.2023.556openalex-snapshot
Co-creation and engagement in a DNA integrity cohort study
inferred← citeshttps://doi.org/10.1038/ejhg.2012.104openalex-snapshot
Publics and biobanks: Pan-European diversity and the challenge of responsible innovation
inferred← citeshttps://doi.org/10.1038/ejhg.2012.213openalex-snapshot
Public support and consent preference for biomedical research and biobanking in Jordan
inferred← citeshttps://doi.org/10.1038/ejhg.2013.276openalex-snapshot
Research participants’ attitudes towards the confidentiality of genomic sequence information
inferred← citeshttps://doi.org/10.1038/ejhg.2013.64openalex-snapshot
Consulting the community: public expectations and attitudes about genetics research
inferred← citeshttps://doi.org/10.1038/ejhg.2014.143openalex-snapshot
Scientists’ perspectives on consent in the context of biobanking research
inferred← citeshttps://doi.org/10.1038/ejhg.2015.27openalex-snapshot
Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature
inferred← citeshttps://doi.org/10.1038/ejhg.2016.111openalex-snapshot
Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts
inferred← citeshttps://doi.org/10.1038/ejhg.2016.30openalex-snapshot
‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research
inferred← citeshttps://doi.org/10.1038/gim.2011.57openalex-snapshot
Genetics researchers’ and IRB professionals’ attitudes toward genetic research review: a comparative analysis
inferred← citeshttps://doi.org/10.1038/gim.2011.62openalex-snapshot
Offering aggregate results to participants in genomic research: opportunities and challenges
inferred← citeshttps://doi.org/10.1038/gim.2012.143openalex-snapshot
“Trust is not something you can reclaim easily”: patenting in the field of direct-to-consumer genetic testing
inferred← citeshttps://doi.org/10.1038/gim.2013.127openalex-snapshot
Stakeholder engagement: a key component of integrating genomic information into electronic health records
inferred← citeshttps://doi.org/10.1038/gim.2014.111openalex-snapshot
Naked bodies, naked genomes: the special (but not exceptional) nature of genomic information
inferred← citeshttps://doi.org/10.1038/gim.2015.138openalex-snapshot
A systematic literature review of individuals’ perspectives on broad consent and data sharing in the United States
inferred← citeshttps://doi.org/10.1038/nrg3083openalex-snapshot
Connecting the public with biobank research: reciprocity matters
inferred← citeshttps://doi.org/10.1038/nrg3493openalex-snapshot
Molecular genetic testing and the future of clinical genomics
inferred← citeshttps://doi.org/10.1038/s10038-019-0587-3openalex-snapshot
The survey of public perception and general knowledge of genomic research and medicine in Japan conducted by the Japan Agency for Medical Research and Development
inferred← citeshttps://doi.org/10.1038/s41431-019-0344-2openalex-snapshot
Motivations for data sharing—views of research participants from four European countries: A DIRECT study
inferred← citeshttps://doi.org/10.1038/s41431-019-0550-yopenalex-snapshot
Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
inferred← citeshttps://doi.org/10.1038/s41431-019-0560-9openalex-snapshot
Dwarna: a blockchain solution for dynamic consent in biobanking
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Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data
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The reuse of genetic information in research and informed consent
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Sharing data for future research'engaging participants' views about data governance beyond the original project: a DIRECT Study
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Stem cell preservation for regenerative therapies: ethical and governance considerations for the health care sector
inferred← citeshttps://doi.org/10.1057/biosoc.2015.20openalex-snapshot
Standardization as performative accountability in biobanking
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Re-examining interpersonal source credibility in collaboration with community: a convergent mixed methods study
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Online discussion effects on intention to participate in genetic research: A longitudinal experimental study
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Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks
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Understanding the data‐sharing debate in the context of Aotearoa/New Zealand: a narrative review on the perspectives of funders, publishers/journals, researchers, participants and Māori collectives
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National interests and international collaboration: tensions and ambiguity among Finns towards usages of tissue samples
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Data sharing across biobanks: epistemic values, data mutability and data incommensurability
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Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research
inferred← citeshttps://doi.org/10.1080/15265161.2018.1431330openalex-snapshot
Misplaced Trust: Building Research Relationships in the Age of Biorepository Networks
inferred← citeshttps://doi.org/10.1080/23294515.2018.1550123openalex-snapshot
Genes wide open: Data sharing and the social gradient of genomic privacy
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Mining the Data: Exploring Rural Patients’ Attitudes about the Use of Their Personal Information in Research
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Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine
inferred← citeshttps://doi.org/10.1089/bio.2012.0010openalex-snapshot
Public Perception Towards Biobanking in Jordan
inferred← citeshttps://doi.org/10.1089/bio.2013.0069openalex-snapshot
Introducing Research Initiatives into Healthcare: What Do Doctors Think?
inferred← citeshttps://doi.org/10.1089/bio.2019.0047openalex-snapshot
Patients' Knowledge and Attitude Toward Biobanks in Eastern Morocco
inferred← citeshttps://doi.org/10.1089/gtmb.2011.0119openalex-snapshot
Donation Intentions for Cancer Genetics Research Among African Americans
inferred← citeshttps://doi.org/10.1093/jamia/ocag060openalex-snapshot
Exploring patient motivations and preferences for medical data sharing with researchers: a simulation study using the iAgree platform
inferred← citeshttps://doi.org/10.1093/jamiaopen/ooab098openalex-snapshot
Exploring public concerns for sharing and governance of personal health information: a focus group study
inferred← citeshttps://doi.org/10.1093/jamiaopen/ooaf031openalex-snapshot
Integrating public preferences to overcome racial disparities in research: findings from a US survey on enhancing trust in research data-sharing practices
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Protecting Genetic Privacy in Biobanking through Data Protection Law
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Table of Cases and Legislation
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0002openalex-snapshot
Genetic Data, Genome Understanding, and Socially Relevant Information
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0003openalex-snapshot
The Context and State of the Art in European Biobanking
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0004openalex-snapshot
Genetic Privacy and Other Interests in Biobanking
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0005openalex-snapshot
The Protection of Genetic Privacy in Biobanking at International Level
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0006openalex-snapshot
Do We Need Data Protection at All?
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0007openalex-snapshot
Testing the GDPR in Relation to Biobanking
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0008openalex-snapshot
Testing the GDPR in Relation to Biobanking
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0009openalex-snapshot
Testing the GDPR in Relation to Biobanking
inferred← citeshttps://doi.org/10.1093/oso/9780192896476.003.0010openalex-snapshot
A Critical Analysis of the Efficacy of the GDPR as a Framework for the Protection of Genetic Privacy in Biobanking
inferred← citeshttps://doi.org/10.1093/phe/phaa034openalex-snapshot
Return of Results in Population Studies: How Do Participants Perceive Them?
inferred← citeshttps://doi.org/10.1097/gim.0b013e3181e38f9eopenalex-snapshot
Genomic research and wide data sharing: Views of prospective participants
inferred← citeshttps://doi.org/10.1097/gim.0b013e3181efdbd0openalex-snapshot
Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium
inferred← citeshttps://doi.org/10.1097/gim.0b013e31821d2f88openalex-snapshot
Active choice but not too active: Public perspectives on biobank consent models
inferred← citeshttps://doi.org/10.1101/2022.10.19.22281283openalex-snapshot
“It is bad because it limits capacity building here back at home” Genetic and genomic researchers’ perspectives on biological sample sharing in collaborative research
inferred← citeshttps://doi.org/10.1101/gr.120329.111openalex-snapshot
Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience
inferred← citeshttps://doi.org/10.1108/ijwis-03-2021-0026openalex-snapshot
Data quality for federated medical data lakes
inferred← citeshttps://doi.org/10.1109/tcbb.2018.2854785openalex-snapshot
On Sharing Intentions, and Personal and Interdependent Privacy Considerations for Genetic Data: A Vignette Study
inferred← citeshttps://doi.org/10.1111/cge.13686openalex-snapshot
Psychological factors that determine people's willingness‐to‐share genetic data for research
inferred← citeshttps://doi.org/10.1111/hex.12122openalex-snapshot
Community engagement with genetics: public perceptions and expectations about genetics research
inferred← citeshttps://doi.org/10.1111/hex.12977openalex-snapshot
‘Sick and tired’: Patients reported reasons for not participating in clinical psychiatric research
inferred← citeshttps://doi.org/10.1111/hex.13067openalex-snapshot
The reported impact of public involvement in biobanks: A scoping review
inferred← citeshttps://doi.org/10.1111/hex.13187openalex-snapshot
Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information
inferred← citeshttps://doi.org/10.1111/j.1369-7625.2011.00701.xopenalex-snapshot
Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?
inferred← citeshttps://doi.org/10.1111/j.1748-720x.2012.00724.xopenalex-snapshot
IRB Decision-Making with Imperfect Knowledge: A Framework for Evidence-Based Research Ethics Review
inferred← citeshttps://doi.org/10.1111/jpet.12678openalex-snapshot
Risk, trust, and altruism in genetic data sharing
inferred← citeshttps://doi.org/10.1126/science.1199000openalex-snapshot
Research Practice and Participant Preferences: The Growing Gulf
inferred← citeshttps://doi.org/10.1136/amiajnl-2012-001026openalex-snapshot
Reducing patient re-identification risk for laboratory results within research datasets
inferred← citeshttps://doi.org/10.1136/bmjopen-2020-045846openalex-snapshot
Citizen engagement initiatives in precision health in the European Union member states: a scoping review
inferred← citeshttps://doi.org/10.1136/bmjopen-2025-107270openalex-snapshot
Returning aggregate research results to participants: a scoping review of current practices, preferences and challenges
inferred← citeshttps://doi.org/10.1136/bmjopen-2025-111653openalex-snapshot
Biobanking knowledge and donation willingness among musculoskeletal patients in England: a multisite cross-sectional study
inferred← citeshttps://doi.org/10.1136/medethics-2019-105651openalex-snapshot
Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence
inferred← citeshttps://doi.org/10.1145/3419249.3420110openalex-snapshot
Futures for Health Research Data Platforms From the Participants’ Perspectives
inferred← citeshttps://doi.org/10.1158/1055-9965.epi-13-0747openalex-snapshot
Association of Acculturation, Nativity, and Years Living in the United States with Biobanking among Individuals of Mexican Descent
inferred← citeshttps://doi.org/10.1159/000324705openalex-snapshot
Public Perspectives Regarding Data-Sharing Practices in Genomics Research
inferred← citeshttps://doi.org/10.1159/000334104openalex-snapshot
An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking
inferred← citeshttps://doi.org/10.1159/000334718openalex-snapshot
Balancing the Risks and Benefits of Genomic Data Sharing: Genome Research Participants’ Perspectives
inferred← citeshttps://doi.org/10.1159/000336541openalex-snapshot
From Protection of Privacy to Control of Data Streams: A Focus Group Study on Biobanks in the Information Society
inferred← citeshttps://doi.org/10.1159/000349924openalex-snapshot
Potential Bias in the Bank: What Distinguishes Refusers, Nonresponders and Participants in a Clinic-Based Biobank?
inferred← citeshttps://doi.org/10.1159/000357958openalex-snapshot
Community Engagement in US Biobanking: Multiplicity of Meaning and Method
inferred← citeshttps://doi.org/10.1159/000360472openalex-snapshot
Intentions to Donate to a Biobank in a National Sample of African Americans
inferred← citeshttps://doi.org/10.1159/000362091openalex-snapshot
Paediatric Biobanks: Opinions, Feelings and Attitudes of Parents towards the Specimen Donation of Their Sick Children to a Hypothetical Biobank
inferred← citeshttps://doi.org/10.1159/000364993openalex-snapshot
Extending the Surrogacy Analogy: Applying the Advance Directive Model to Biobanks
inferred← citeshttps://doi.org/10.1159/000368959openalex-snapshot
DataSHIELD: An Ethically Robust Solution to Multiple-Site Individual-Level Data Analysis
inferred← citeshttps://doi.org/10.1159/000375441openalex-snapshot
The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research
inferred← citeshttps://doi.org/10.1159/000452093openalex-snapshot
Community Perceptions of Biobanking Participation: A Qualitative Study among Mexican-Americans in Three Texas Cities
inferred← citeshttps://doi.org/10.1159/000500442openalex-snapshot
Multiple Stakeholder Views on Data Sharing in a Biobank in an Integrated Healthcare Delivery System: Implications for Biobank Governance
inferred← citeshttps://doi.org/10.1159/000505271openalex-snapshot
“I’m a Little More Trusting”: Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans
inferred← citeshttps://doi.org/10.1159/000513723openalex-snapshot
Motivating and Discouraging Factors for Bipolar Patient Participation in Genomic Research
inferred← citeshttps://doi.org/10.1159/000533985openalex-snapshot
Public Health Genomics: Time to Sharpen the Focus
inferred← citeshttps://doi.org/10.1161/circulationaha.112.000604openalex-snapshot
Genome- and Phenome-Wide Analyses of Cardiac Conduction Identifies Markers of Arrhythmia Risk
inferred← citeshttps://doi.org/10.1177/0162243914542162openalex-snapshot
Narratives of Participation in Autism Genetics Research
inferred← citeshttps://doi.org/10.1177/0963662515623925openalex-snapshot
Identifying public expectations of genetic biobanks
inferred← citeshttps://doi.org/10.1177/0963662520942132openalex-snapshot
A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England
inferred← citeshttps://doi.org/10.1177/09636625241230864openalex-snapshot
A systematic literature review of the ‘commercialisation effect’ on public attitudes towards biobank and genomic data repositories
inferred← citeshttps://doi.org/10.1177/1049732315591150openalex-snapshot
Deliberative Discussion Focus Groups
inferred← citeshttps://doi.org/10.1177/1073110519840486openalex-snapshot
Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons
inferred← citeshttps://doi.org/10.1177/1355819617751555openalex-snapshot
Systematic review of participants’ attitudes towards data sharing: a thematic synthesis
inferred← citeshttps://doi.org/10.1177/1525822x20982089openalex-snapshot
Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research
inferred← citeshttps://doi.org/10.1177/1556264614540595openalex-snapshot
Professionals’ Attitudes Regarding Large-Scale Genetic Information Generated Through Next Generation Sequencing in Research
inferred← citeshttps://doi.org/10.1177/1556264614553922openalex-snapshot
Genomic Data in the Electronic Medical Record
inferred← citeshttps://doi.org/10.1177/1556264614564975openalex-snapshot
The MICHR Genomic DNA BioLibrary
inferred← citeshttps://doi.org/10.1177/1556264615592387openalex-snapshot
Trust, Respect, and Reciprocity
inferred← citeshttps://doi.org/10.1177/1556264616667126openalex-snapshot
Allocation of Resources to Communication of Research Result Summaries
inferred← citeshttps://doi.org/10.1177/1556264616668973openalex-snapshot
Development and Validation of the Biomedical Research Trust Scale (BRTS) in English and Spanish
inferred← citeshttps://doi.org/10.1177/1556264617723137openalex-snapshot
Transparency of Biobank Access in Canada: An Assessment of Industry Access and the Availability of Information on Access Policies and Resulting Research
inferred← citeshttps://doi.org/10.1177/1556264619888365openalex-snapshot
Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis
inferred← citeshttps://doi.org/10.1177/1556264620903595openalex-snapshot
Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants
inferred← citeshttps://doi.org/10.1177/1556264620920460openalex-snapshot
A Scenario-Based Methodology for Analyzing the Ethical, Legal, and Social Issues in Genomic Data Sharing
inferred← citeshttps://doi.org/10.1177/15562646231171289openalex-snapshot
Genetic and Genomic Researchers’ Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study
inferred← citeshttps://doi.org/10.1177/15562646261452724openalex-snapshot
Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach
inferred← citeshttps://doi.org/10.1177/1740774516648907openalex-snapshot
A comparison of institutional review board professionals’ and patients’ views on consent for research on medical practices
inferred← citeshttps://doi.org/10.1186/1746-5354-6-3-50openalex-snapshot
Community engagement in biobanking: Experiences from the eMERGE Network
inferred← citeshttps://doi.org/10.1186/1755-8794-4-13openalex-snapshot
The eMERGE Network: A consortium of biorepositories linked to electronic medical records data for conducting genomic studies
inferred← citeshttps://doi.org/10.1186/1755-8794-6-8openalex-snapshot
Cancer patient perceptions on the ethical and legal issues related to biobanking
inferred← citeshttps://doi.org/10.1186/s12874-016-0263-7openalex-snapshot
Conducting a large, multi-site survey about patients’ views on broad consent: challenges and solutions
inferred← citeshttps://doi.org/10.1186/s12874-018-0619-2openalex-snapshot
Determinants of the willingness to participate in biobanking among Malaysian stakeholders in the Klang Valley
inferred← citeshttps://doi.org/10.1186/s12874-023-01940-6openalex-snapshot
A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development
inferred← citeshttps://doi.org/10.1186/s12910-020-00504-3openalex-snapshot
Motives of contributing personal data for health research: (non-)participation in a Dutch biobank
inferred← citeshttps://doi.org/10.1186/s12910-021-00576-9openalex-snapshot
Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin
inferred← citeshttps://doi.org/10.1186/s12910-022-00744-5openalex-snapshot
Who’s afraid of genetic tests?: An assessment of Singapore’s public attitudes and changes in attitudes after taking a genetic test
inferred← citeshttps://doi.org/10.1186/s13023-016-0527-7openalex-snapshot
The alliance between genetic biobanks and patient organisations: the experience of the telethon network of genetic biobanks
inferred← citeshttps://doi.org/10.1186/s13229-017-0154-8openalex-snapshot
Bio-collections in autism research
inferred← citeshttps://doi.org/10.1186/s40246-018-0153-7openalex-snapshot
Public attitudes in Japan toward participation in whole genome sequencing studies
inferred← citeshttps://doi.org/10.1186/s40504-015-0024-0openalex-snapshot
Constructing populations in biobanking
inferred← citeshttps://doi.org/10.1186/s40504-016-0036-4openalex-snapshot
The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate
inferred← citeshttps://doi.org/10.1210/jc.2012-2471openalex-snapshot
Evidence for Chromosome 2p16.3 Polycystic Ovary Syndrome Susceptibility Locus in Affected Women of European Ancestry
inferred← citeshttps://doi.org/10.12659/msm.944263openalex-snapshot
Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland
inferred← citeshttps://doi.org/10.12688/wellcomeopenres.16558.1openalex-snapshot
Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India
inferred← citeshttps://doi.org/10.12688/wellcomeopenres.17000.1openalex-snapshot
Considerations for an integrated population health databank in Africa: lessons from global best practices
inferred← citeshttps://doi.org/10.1371/journal.pone.0129924openalex-snapshot
Gay and Bisexual Men’s Perceptions of the Donation and Use of Human Biological Samples for Research: A Qualitative Study
inferred← citeshttps://doi.org/10.1371/journal.pone.0135001openalex-snapshot
Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland
inferred← citeshttps://doi.org/10.1371/journal.pone.0138239openalex-snapshot
To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region
inferred← citeshttps://doi.org/10.1371/journal.pone.0177158openalex-snapshot
Open sharing of genomic data: Who does it and why?
inferred← citeshttps://doi.org/10.1371/journal.pone.0204417openalex-snapshot
A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States
inferred← citeshttps://doi.org/10.1371/journal.pone.0221496openalex-snapshot
Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
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