From consent to institutions
Designing adaptive governance for genomic biobanks
Bibliographic Data
| ID | 4601323 |
|---|---|
| Authors | Kieran C O''Doherty (0000-0002-9242-2061, University of Guelph), Martha Burge (0000-0002-9443-0671, University of British Columbia), Michael M Burge, Michael M Burgess, Kelly Edwards (University of Washington), Richard P Gallagher (0000-0003-2365-0391, BC Cancer Agency), Alice K Hawkins (University of British Columbia), Jonathan Kaye (0000-0002-7311-4725, University of Oxford), Jane Kaye, Veronica Mccaffrey (Health Canada), David E Winickoff (University of California, Berkeley) |
| Year | 2011 |
| Volume | 73 |
| Issue | 3 |
| Pages | 367-374 |
| Publication date | 2011-08-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Social Science & Medicine (JOURNAL) |
| Journal identifiers | ISSN: 0277-9536 • E-ISSN: 1873-5347 |
| Publisher | Elsevier BV (PUBLISHER) |
| DOI | 10.1016/j.socscimed.2011.05.046 |
| PMID | 21726926 |
| OpenAlex | W2088913689 |
| Language | EN |
| Citations received | 28 |
| References cited | 48 |
Biobank · Bioinformatics · Biology · Business · Corporate governance · Engineering ethics · Environmental health · Information governance · Information system · Informed consent · Political science · Population · Public relations · Research ethics · Biomedical Ethics and Regulation · Engineering · Ethics in Clinical Research · Ethics in medical practice · Law · Medicine
Organoid biobanking, autonomy and the limits of consent
Adapting the deliberative democracy approach to LMIC settings
Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse
Testing a deliberative democracy method with citizens of African ancestry to weigh pros and cons of targeted screening for hereditary breast and ovarian cancer risk
Patient perspectives on research use of residual biospecimens and health information
What can data trusts for health research learn from participatory governance in biobanks
Have We Asked Too Much of Consent
A Just Genomics Needs an Elsi of Translation
Democratizing Health Research Through Data Cooperatives
Scientific Citizenship’s Youngest Domain
Reconceptualizing the right to withdraw in stem cell research
Learning accountable governance
Trust, trustworthiness, and relationships
Engaging diverse populations about biospecimen donation for cancer research
Cool! and creepy’
Property and human genetic information
Genuine participation in participant-centred research initiatives
Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing
Economics of Biobanking
The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks
Allocation of Resources to Communication of Research Result Summaries
Transparency of Biobank Access in Canada
Public Perspectives on Consent for and Governance of Biobanking in Japan
Deliberating with purpose
Constructing populations in biobanking
Neglected ethical issues in biobank management
Understanding public reactions to commercialization of biobanks and use of biobank resources
Resisting big data exploitations in public healthcare
What Makes Clinical Research Ethical?
The Havasupai Indian Tribe Case — Lessons for Research Involving Stored Biologic Samples
A vision for the future of genomics research
Trust
Race to the Finish
Public Health Genomics (PHG) and Public Participation
Is Information Good for Deliberation? Link-Posting in an Online Forum
Biobank governance
Glad You Asked
Trust
A Typology of Public Engagement Mechanisms
Involving citizens in the ethics of biobank research
Tackling community concerns about commercialisation and genetic research
| Unique citing works | 28 |
|---|---|
| Citations per year | 2 |
| Citation span | 2012 - 2026 (15) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 28 |