Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler
American Journal of Bioethics 15 (9):34-42 (2015)
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Abstract |
Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim..
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DOI | 10.1080/15265161.2015.1062162 |
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References found in this work BETA
“It’s My Blood”: Ethical Complexities in the Use, Storage and Export of Biological Samples: Perspectives From South African Research Participants.Keymanthri Moodley, Nomathemba Sibanda, Kelsey February & Theresa Rossouw - 2014 - BMC Medical Ethics 15 (1):4.
Broad Versus Blanket Consent for Research with Human Biological Samples.David Wendler - 2013 - Hastings Center Report 43 (5):3-4.
Community Engagement in Biobanking: Experiences From eMERGE Network.Amy A. Lemke, Joel T. Wu, Carol Waudby, Jill Pulley, Carol P. Somkin & Susan Brown Trinidad - 2010 - Genomics, Society and Policy 6 (3):1-18.
Citations of this work BETA
Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.
Biomedical Big Data: New Models of Control Over Access, Use and Governance.Alessandro Blasimme & Effy Vayena - 2017 - Journal of Bioethical Inquiry 14 (4):501-513.
Regulation of Genomic and Biobanking Research in Africa: A Content Analysis of Ethics Guidelines, Policies and Procedures From 22 African Countries.Jantina de Vries, Syntia Nchangwi Munung, Alice Matimba, Sheryl McCurdy, Odile Ouwe Missi Oukem-Boyer, Ciara Staunton, Aminu Yakubu & Paulina Tindana - 2017 - BMC Medical Ethics 18 (1):8.
Broad Consent for Biobanks is Best – Provided It is Also Deep.Rasmus Bjerregaard Mikkelsen, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2019 - BMC Medical Ethics 20 (1):1-12.
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