Strategies to Improve Ethical and Responsible Digital Health Research
January 26, 2023
Camille Nebeker, EdD, MS
Director, UC San Diego Research Ethics Program
Co-Founder & Director, ReCODE Health Center
Associate Professor, University of California, San Diego
About the Webinar:
The use of digital strategies and tools is on the rise in health research; however, the design and use of these technologies can have ethical, legal and social implications (ELSIs). This session will highlight novel strategies for identifying possible unintended ELSIs when developing and evaluating a digital health study – specifically risk assessment and barriers to informed consent. Tools developed to support digital health researchers, including the Digital Health Checklist (DHC), will be introduced. Drawing on case examples from existing digital health research, the session will explore how researchers can apply the DHC to evaluate technologies being considered for use in the research. Moreover, attendees will receive tips on how study information can be conveyed to prospective participants to enhance the likelihood that consent is informed.
- Identify unique ethical, legal/regulatory and social implications that may arise during the study design and IRB review of digital health research.
- Apply a digital health decision support framework to better understand digital health research influences including access and usability, privacy, risk assessment and data management
- Describe the roles and responsibilities of key stakeholders in the digital health ecosystem.
About Camille Nebeker:
Camille Nebeker, EdD, MS, is an Associate Professor with appointments with the UC San Diego Design Lab and the Wertheim School of Public Health. She is director of the UC San Diego Research Ethics Program. She co-founded and directs the ReCODE Health center, which provides education and consultation services to guide ethical practices in technology-supported health research. Dr. Nebeker applies a human centered design approach to shape ethical research practices (e.g., risk assessment, informed consent, return of results), which has led to development of decision support tools (see: Digital Health Checklist and Framework and Connected and Open Research Ethics platform). She serves as a member of the World Health Organization Digital Health and IEEE Organizational Governance of AI Working Group. She is Chair of the American Association for the Advancement of Science Committee on Scientific Freedom and Responsibility. Dr. Nebeker’s research has received support from federal, foundation and industry sources including the NSF, NIH, Office of Research Integrity, RWJF and IBM. Publications related to her work are accessible via: https://escholarship.org/uc/recodehealth_publications. More about Camille Nebeker.