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.
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?
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?
- Beskow LM, Burke, Merz JF, et al. Informed consent for population-based research involving genetics. JAMA (2001)
- Haga SB, Beskow LM. Ethical, legal, and social implications for biobanks for genetics research. Advances in Genetics (2008)
- McGuire AL, Beskow LM. Informed consent in genomics and genetic research. Annual Review of Genomics & Human Genetics (2010)
- Beskow LM. Lessons from HeLa cells: The ethics and policy of biospecimens. Annual Review of Genomics & Human Genetics (2016)
- Burke W, Beskow LM, Trinidad SB, et al. Informed consent in translational genomics: insufficient without trustworthy governance. Journal of Law, Medicine & Ethics (2018)
Download Biobank Consent Materials
Simplified Consent Form
Traditional Consent Form
Comprehension Assessment, True / False
Comprehension Assessment, Multiple Choice