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Abstract
It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical Data Practices framework. The framework outlines six principles relevant to the collection and use of personal data—minimizing harm, fairly distributing benefits and burdens, respecting autonomy, transparency, accountability, and inclusion—and translates these principles into action-guiding practical imperatives for companies that process personal data. In addition to informing policy, the practical imperatives can be voluntarily adopted by companies to promote ethical data practices.
ACKNOWLEDGEMENTS
The authors thank Amaya Diana and Cathy Zhang for research support and Marcy Wilder for her intellectual contributions to the project and feedback on an early version of the manuscript.
DISCLOSURE STATEMENT
Dr. Joffe is a paid member of a data and safety monitoring board for CSL Behring. Dr. Mello was an advisor to Verily Life Sciences LLC from 2020-22 on product designed to facilitate safe return to work and school during COVID-19.
Dr. Ossorio does bioethics consulting for Eli Lilly and Roche-Genentech.
Dr. Patil is an investor at GreatPoint Ventures and an limited partner in several other funds that focus on starting companies in the data and associated technology space. He is also a board member at Devoted Health, as well as a member of the Defense Science Board.
Dr. Emanuel serves on the following: Board of Advisors, Cellares; Occasional Advisor, Clarify Health; Unpaid External Advisory Board Member, Village MD; Occasional Advisor, Notable; Advisory Board Member, JSL Health Fund; Advisory Board Member, Peterson Center on Healthcare; Special Advisor, to Director General WHO; Expert Advisory Member, WHO COVID-19 Ethics & Governance Working Group; Advisory Board Member, Biden’s Transition COVID-19 Committee; Advisory Board Member, HIEx Health Innovation Exchange Partnership sponsored by the UN Geneva. He also reports the following engagements: uncompensated speaker UNESCO Global Conference, uncompensated speaker School of Pharmaceutical & Biotech Business, uncompensated speaker Blue Cross Blue Shield, uncompensated speaker National Health Equity Summit, uncompensated speaker The Galien Foundation, uncompensated speaker Temple Shalom Chicago speaker series, uncompensated speaker AIFA Italian Medical Agency, uncompensated speaker Rainbow Push Coalition/CEF, uncompensated speaker IDSA, personal fees from Rise Health, uncompensated speaker Vin Future, personal fees from Well Sky, personal fees from Rightway, uncompensated speaker Brown University, personal fees from Signature Healthcare Foundation, uncompensated speaker Organisation for Economic Cooperation & Development, personal fees from Healthcare Leaders of New York, uncompensated speaker 21st Population Health Colloquium, personal fees from Medimpact, uncompensated speaker American Academy of Arts & Sciences, uncompensated speaker Village MD, uncompensated speaker The Galien Foundation, uncompensated speaker University of Sydney Australia, personal fees from Massachusetts Association of Health Plans, uncompensated speaker Virtahealth, uncompensated speaker Health Action Alliance, personal fees from Yale University Grand Rounds, personal fees from Hartford Medical Society, uncompensated speaker UCSF, uncompensated speaker Ichan School of Medicine, uncompensated speaker University of Minnesota, uncompensated speaker IPHS Addis Conference, personal fees from AAHC Global Innovation Forum, personal fees from HMSA & Queens Health System, uncompensated speaker Faith Health Alliance Project, Travel fees from Macalester College, uncompensated speaker CDC Learning event, Travel fees Oak CEO Summit, uncompensated speaker Primary Care Transformation Summit, uncompensated speaker 16th World Congress of Bioethics, uncompensated speaker Blue Cross Blue Shield Research Health Alliance, personal fees from Advocate Aurora Health Summit, Travel fees DPharm Conference, personal fees from UPMC Shadyside Medical Center, uncompensated speaker ASCO Quality Care Symposium, Travel fees UCSF Department of Urology Grand Rounds, personal fees from Advocate Aurora Health, personal fees from Cain Brothers Conference, personal fees from Bowdoin College, Travel fees The Galien Foundation Jerusalem Ethics Forum, Travel fees HLTH 2022 Las Vegas, uncompensated speaker National Academies Forum on Microbial Threats, uncompensated speaker National University of Singapore, uncompensated speaker Williams College, uncompensated discussant NIH Grand Rounds, Travel fees HMSA, uncompensated speaker Stanford Graduate School of Business, uncompensated panelist World Bank, Travel fees Tel Aviv University, Travel fees The Suntory Foundation, personal fees Ontario Hospital Association.