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?

  • Beskow LM, Hammack CM, Brelsford KM, McKenna KC. Thought leader perspectives on risks in precision medicine research. In: IG Cohen, HF Lynch, E Vayena, Gasser U (eds), Big Data, Health Law, and Bioethics. Cambridge, UK: Cambridge University Press (2018)

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?

Beskow LM, Hammack-Aviran CM, Brelsford KM. Developing model biobanking consent language: what matters to prospective participants? BMC Medical Research Methodology (2020)

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

Simplified Consent Form

Simplified Consent Language Describing Certificates of Confidentiality

Traditional Consent Form

Model Consent Language For Precision Medicine Research

Identify. Study. Disseminate. Translate

We are currently collaborating with Drs. Ellen Clayton and Brad Malin on privacy and identifiability issues in ancestry and kinship testing