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The views expressed in the seminars and events hosted by KPWHRI do not necessarily reflect those of Kaiser Permanente
Speaker: Stephanie Morain (she/her), Assistant Professor in the Dept. of Health Policy & Management at the Johns Hopkins Bloomberg School of Public Health, and core faculty of the Berman Institute of Bioethics, is a bioethics and health policy researcher who conducts empirical and normative analyses to inform emerging ethical issues in biomedical research and in public health.
Numerous arguments have been advanced for broadly sharing de-identified, participant-level clinical trials data, yet data sharing in pragmatic clinical trials (PCTs) presents a range of ethical challenges. Example challenges include: the use of waivers or alterations of informed consent for some PCTs; the potential for data sharing in PCTs to present risks not only for individual patient-subjects, but also for health systems and the clinicians within them; and enhanced reidentification risks due to the use of extant data. This presentation will integrate policy analysis with qualitative data from key stakeholders to highlight the limitations of existing data sharing policies and guidance when applied to PCTs.
Our Seattle offices sit on the occupied land of the Duwamish and by the shared waters of the Coast Salish people, who have been here thousands of years and remain. Learn about practicing land acknowledgment.