Confidentiality in Research

We conduct research on confidentiality risks and harms in large-scale genomic, translational, and other biomedical research; the scope and limits of applicable protections, including Certificates of Confidentiality; and how these are and should be described to prospective participants.

Funding for this research was provided by the National Human Genome Research Institute.

Confidentiality Risks and Protections in Precision Medicine Research

What are the risks in precision medicine research?

What are the potential benefits and harms in precision medicine research?

What are the strengths and limitations of confidentiality protections available for precision medicine research?

What consent language captures this precision medicine research landscape and helps people think about their own values relative to participation?

Certificates of Confidentiality

How do IRBs and institutional legal counsel view and use Certificates?

What do legislation, regulations, and case law tell us about Certificates’ effectiveness?

How should Certificates be described in informed consent forms and processes?

Foundational Publications on Certificates of Confidentiality

Download Confidentiality
Consent Materials




Be sure to check back for updates on our new research, “Exploring Choice of Law Challenges in Multi-Site Precision Medicine Research.”