February 9, 2019

We conduct research to develop practical, flexible, evidence-based resources that satisfy regulatory and best practice requirements and focus on the details that participants and other key stakeholders identify as most relevant for informed decision making.

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


Empirical Publications

What do people understand and what are their opinions about informed consent for biobanking?

What information is most important for people to know when making a decision about biobank participation?

What is an easy way to convey the information people want to know that also meets regulatory and best practice guidelines?

Which of the information in a biobank consent form must people understand to give valid consent?

Does simplified consent help improve comprehension? What about a quiz?

What is the role of comprehension in informed consent?


Spanish-Language Materials

Do professional translation services provide accurate English-to-Spanish consent form translations?

What do native Spanish-speakers understand and what are their opinions about informed consent for biobanking?

Foundational Publications


Download Biobank Consent Materials

Simplified Consent Form

Simplified Consent Form

Traditional Consent Form

Traditional Consent Form

Comprehension Assessment, True/False

Comprehension Assessment, True / False

Comprehension Assessment, Multiple Choice

Comprehension Assessment, Multiple Choice


Coming Soon

Identify. Study. Disseminate. Translate

Be sure to check out the consent materials we developed as part of our research on Confidentiality Risks and Protections in Precision Medicine Research.