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Broad Consent for Research With Biological Samples: Workshop Conclusions

Broad Consent for Research With Biological Samples: Workshop Conclusions

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Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era Introduction to the article collection 'Translation in healthcare: ethical, legal, and social implications'A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.Is it ethical to prevent secondary use of stored biological samples and data derived from consenting research participants? The case of Malawi.A Randomised Controlled Trial of Consent Procedures for the Use of Residual Tissues for Medical Research: Preferences of and Implications for Patients, Research and Clinical Practice.Understanding the Public's Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey.Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries.Community recommendations on biobank governance: Results from a deliberative community engagement in California.A qualitative study of participants' views on re-consent in a longitudinal biobank.The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.Biobank Regulation in South Korea.Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks.Broad consent for health care-embedded biobanking: understanding and reasons to donate in a large patient sample.Past, Present, and Future of Informed Consent in Pain and Genomics Research: Challenges Facing Global Medical Community.An Assessment of the Human Subjects Protection Review Process for Exempt Research.Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles.Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report Authorization of tissues from deceased patients for genetic research.Biomedical Big Data: New Models of Control Over Access, Use and Governance.An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.Sharing and reuse of individual participant data from clinical trials: principles and recommendations.Crushing Consent Under the Weight of Expectations.Effect of deliberation on the public's attitudes toward consent policies for biobank research.Love Thy Neighbor: Replacing Paternalistic Protection as the Grounds for Research Ethics.Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.Participants' Accounts on Their Decision to Join a Cohort Study With an Attached Biobank: A Qualitative Content Analysis Study Within Two German Studies.Human embryos and eggs: from long-term storage to biobanking.Facilitating Autonomy With Broad Consent.Ethical principles for the use of human cellular biotechnologies.Brain tumor biobanking in the precision medicine era: building a high-quality resource for translational research in neuro-oncology.An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.From in vivo to in vitro: How the Guatemala STD Experiments Transformed Bodies Into Biospecimens.Evolving perspectives on broad consent for genomics research and biobanking in Africa. Report of the Second H3Africa Ethics Consultation Meeting, 11 May 2015.South Korea: in the midst of a privacy reform centered on data sharing Australia: regulating genomic data sharing to promote public trust Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science Where Did Informed Consent for Research Come From?

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Broad Consent for Research With Biological Samples: Workshop Conclusions

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American Journal of Bioethics

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Broad Consent for Research With Biological Samples: Workshop Conclusions

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Ben Berkman

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Bernie Lo

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Carol Weil

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Dan Brock

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Laura Rodriguez

http://www.w3.org/2001/XMLSchema#string

Mats G Hansson

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Rebecca Pentz

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Sara Hull

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Scott Kim

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From patients to partners: participant-centric initiatives in biomedical research

Advocacy groups as research organizations: the PXE International example

Dynamic consent: a patient interface for twenty-first century research networks

Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project

The prevalence of hepatitis C virus infection in the United States, 1988 through 1994

Respecting donors to biobank research.

Publics and biobanks: Pan-European diversity and the challenge of responsible innovation

Active choice but not too active: public perspectives on biobank consent models.

Public attitudes regarding the use of electronic health information and residual clinical tissues for research

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Robert Cook-Deegan

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Benjamin S Wilfond

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