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?
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Beskow LM, Dean E. Informed consent for biorepositories: assessing prospective participants’ understanding and opinions. Cancer Epidemiology, Biomarkers & Prevention (2008)
What information is most important for people to know when making a decision about biobank participation?
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Beskow LM, Friedman J, Hardy C, et al. Simplifying informed consent for biorepositories: stakeholder perspectives. Genetics in Medicine (2010)
What is an easy way to convey the information people want to know that also meets regulatory and best practice guidelines?
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Beskow LM, Friedman J, Hardy C, et al. Developing a simplified consent form for biobanking. PLoS One (2010)
Which of the information in a biobank consent form must people understand to give valid consent?
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Beskow LM, Dombeck C, Thompson C, et al. Informed consent for biobanking: consensus-based guidelines for adequate comprehension. Genetics in Medicine (2015)
Does simplified consent help improve comprehension? What about a quiz?
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Beskow LM, Lin L, Dombeck CB, et al. Improving biobank consent comprehension: A national randomized survey to assess the effect of a simplified form and review/retest intervention. Genetics in Medicine (2017)
What is the role of comprehension in informed consent?
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Beskow LM, Weinfurt KP. Exploring understanding of “understanding”: The paradigm case of biobank consent comprehension. American Journal of Bioethics (2019)
Spanish-Language Materials
Do professional translation services provide accurate English-to-Spanish consent form translations?
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Brelsford KM, Ruiz E, Beskow LM. Developing informed consent materials for non-English-speaking participants: an analysis of four professional firm translations from English to Spanish. Clinical Trials (2018)
What do native Spanish-speakers understand and what are their opinions about informed consent for biobanking?
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Brelsford KM, Ruiz E, Hammack CM, Beskow LM. Improving translation and cultural appropriateness of Spanish-language consent materials. Ethics & Human Research (2019)
Foundational Publications
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Beskow LM, Burke, Merz JF, et al. Informed consent for population-based research involving genetics. JAMA (2001)
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Haga SB, Beskow LM. Ethical, legal, and social implications for biobanks for genetics research. Advances in Genetics (2008)
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McGuire AL, Beskow LM. Informed consent in genomics and genetic research. Annual Review of Genomics & Human Genetics (2010)
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Beskow LM. Lessons from HeLa cells: The ethics and policy of biospecimens. Annual Review of Genomics & Human Genetics (2016)
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Burke W, Beskow LM, Trinidad SB, et al. Informed consent in translational genomics: insufficient without trustworthy governance. Journal of Law, Medicine & Ethics (2018)
