Journal of Law, Medicine and Ethics 46 (1):119-129 (2018)
Authors |
|
Abstract |
To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders acquire a common substantive orientation.
|
Keywords | No keywords specified (fix it) |
Categories |
No categories specified (categorize this paper) |
DOI | 10.1177/1073110518766026 |
Options |
![]() ![]() ![]() ![]() |
Download options
References found in this work BETA
Broad Consent for Research With Biological Samples: Workshop Conclusions.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 - 2015 - American Journal of Bioethics 15 (9):34-42.
Nanotechnology, Governance, and Public Deliberation: What Role for the Social Sciences?Phil Macnaghten, , Matthew B. Kearnes & Brian Wynne - 2005 - Science Communication 27 (2):268-291.
Examining Provisions Related to Consent in the Revised Common Rule.Jeremy Sugarman - 2017 - American Journal of Bioethics 17 (7):22-26.
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.
Becoming Partners, Retaining Autonomy: Ethical Considerations on the Development of Precision Medicine.Alessandro Blasimme & Effy Vayena - 2016 - BMC Medical Ethics 17 (1):67.
View all 16 references / Add more references
Citations of this work BETA
Identifying Ethical Considerations for Machine Learning Healthcare Applications.Danton S. Char, Michael D. Abràmoff & Chris Feudtner - 2020 - American Journal of Bioethics 20 (11):7-17.
The Ethics of Uncertainty for Data Subjects.Philip Nickel - 2019 - In Jenny Krutzinna & Luciano Floridi (eds.), The Ethics of Medical Data Donation. Springer Verlag. pp. 55-74.
“Who is Watching the Watchdog?”: Ethical Perspectives of Sharing Health-Related Data for Precision Medicine in Singapore.Tamra Lysaght, Angela Ballantyne, Vicki Xafis, Serene Ong, Gerald Owen Schaefer, Jeffrey Min Than Ling, Ainsley J. Newson, Ing Wei Khor & E. Shyong Tai - 2020 - BMC Medical Ethics 21 (1):1-11.
Genes Wide Open: Data Sharing and the Social Gradient of Genomic Privacy.Tobias Haeusermann, Marta Fadda, Alessandro Blasimme, Bastian Greshake Tzovaras & Effy Vayena - forthcoming - Ajob Empirical Bioethics:1-15.
The Past, Present, and Future of Informed Consent in Research and Translational Medicine.Susan M. Wolf, Ellen Wright Clayton & Frances Lawrenz - 2018 - Journal of Law, Medicine and Ethics 46 (1):7-11.
View all 7 citations / Add more citations
Similar books and articles
Four Paradigms of Clinical Research and Research Oversight.Ezekiel J. Emanuel & Christine Grady - 2007 - Cambridge Quarterly of Healthcare Ethics 16 (1):82-96.
Gene Therapy Oversight: Lessons for Nanobiotechnology.Susan M. Wolf, Rishi Gupta & Peter Kohlhepp - 2009 - Journal of Law, Medicine and Ethics 37 (4):659-684.
Editors' Overview: Topics in the Responsible Management of Research Data.Joe Giffels, Sara H. Vollmer & Stephanie J. Bird - 2010 - Science and Engineering Ethics 16 (4):631-637.
Ethical Oversight of Research on Patient Health Care.Mildred Z. Solomon & Ann Bonham - 2013 - In Mildred Z. Solomon & Ann Bonham (eds.), Ethical Oversight of Learning Health Care Systems. Wiley-Blackwell. pp. 2-3.
Assuring Adequate Protections in International Health Research: A Principled Justification and Practical Recommendations for the Role of Community Oversight.D. Buchanan, S. Sifunda, N. Naidoo, S. James & P. Reddy - 2008 - Public Health Ethics 1 (3):246-257.
The Research-Treatment Distinction : A Problematic Approach for Determining Which Activities Should Have Ethical Oversight.Nancy E. Klass [ - 2013 - In Mildred Z. Solomon & Ann Bonham (eds.), Ethical Oversight of Learning Health Care Systems. Wiley-Blackwell.
Review of the OSHA Framework for Oversight of Occupational Environments. [REVIEW]Jae-Young Choi & Gurumurthy Ramachandran - 2009 - Journal of Law, Medicine and Ethics 37 (4):633-650.
Ohrp Compliance Oversight Letters: An Update.Carol Weil - 2010 - IRB: Ethics & Human Research 32 (2):1-6.
Beyond Conflict of Interest: The Responsible Conduct of Research.Lawrence J. Rhoades - 2002 - Science and Engineering Ethics 8 (3):459-468.
Commentary: Who's Afraid of the RAC? Lessons From the Oversight of Controversial Science.Jeffrey P. Kahn - 2009 - Journal of Law, Medicine and Ethics 37 (4):685-687.
Consent and the Ethical Duty to Participate in Health Data Research.Angela Ballantyne & G. Owen Schaefer - 2018 - Journal of Medical Ethics 44 (6):392-396.
Informed Consent and the Disclosure of Clinical Results to Research Participants.Effy Vayena, Samia A. Hurst, Celine Moret & Alessandro Blasimme - 2017 - American Journal of Bioethics 17 (7):58-60.
Revolution or Reform in Human Subjects Research Oversight.Steven Joffe - 2012 - Journal of Law, Medicine and Ethics 40 (4):922-929.
Developing U.S. Oversight Strategies for Nanobiotechnology: Learning From Past Oversight Experiences.Jordan Paradise, Susan M. Wolf, Jennifer Kuzma, Aliya Kuzhabekova, Alison W. Tisdale, Efrosini Kokkoli & Gurumurthy Ramachandran - 2009 - Journal of Law, Medicine and Ethics 37 (4):688-705.
Moving Beyond Compliance: Measuring Ethical Quality to Enhance the Oversight of Human Subjects Research.Holly Taylor - 2007 - IRB: Ethics & Human Research 29 (5).
Analytics
Added to PP index
2018-03-28
Total views
12 ( #761,197 of 2,419,781 )
Recent downloads (6 months)
1 ( #542,712 of 2,419,781 )
2018-03-28
Total views
12 ( #761,197 of 2,419,781 )
Recent downloads (6 months)
1 ( #542,712 of 2,419,781 )
How can I increase my downloads?
Downloads