We conduct research on ethical considerations in how individuals are identified and contacted about research participation, striving to contribute to the development of balanced approaches that provide appropriate protections yet avoid overly restrictive policies that have a chilling effect on beneficial research and limit opportunities for those who would like to participate.
Funding for this research was provided in part by the National Human Genome Research Institute.
Genotype-Driven Research Recruitment
What ethical challenges are raised when researchers identify and recruit individuals for studies based on knowledge of the presence or absence of a gene variant of interest?
- Beskow LM, Linney KN, Radtke RA, et al. Ethical challenges in genotype-driven research recruitment. Genome Research (2010)
What are prospective participants’ attitudes and opinions toward genotype-driven recruitment?
- Beskow LM, Namey EE, Cadigan RJ, et al. Research participants’ perspectives on genotype-driven research recruitment. Journal of Empirical Research on Human Research Ethics (2011)
- Cadigan RJ, Michie M, Henderson GE, et al. The meaning of genetic research results: reflections from individuals with and without a known genetic disorder. Journal of Empirical Research on Human Research Ethics (2011)
- Namey EE, Beskow LM. Epilepsy patient-participants and genetic research results as ‘answers’. Journal of Empirical Research on Human Research Ethics (2011)
- Tabor HK, Brazg T, Crouch J, et al. Parent perspectives on pediatric genetic research and the implications for genotype-driven research recruitment. Journal of Empirical Research on Human Research Ethics (2011)
- Michie M, Cadigan RJ, Henderson G, Beskow LM. Am I a control? Genotype-driven research recruitment and self-understandings of study participants. Genetics in Medicine (2012)
What are IRB leaders’ perspectives on genotype-driven research recruitment?
- Beskow LM, Namey EE, Miller PR, et al. IRB chairs’ perspectives on genotype-driven research recruitment. IRB: Ethics & Human Research (2012)
What are ethical ways to approach genotype-driven research recruitment?
- Beskow LM, Fullerton SM, Namey EE, et al. Recommendations for ethical approaches to genotype-driven research recruitment. Human Genetics (2012)
- Beskow LM. Genotype-driven recruitment and the disclosure of individual research results. American Journal of Bioethics (2017)
Research Recruitment through Cancer Registries
What are cancer registries’ policies and practices regarding research recruitment?
- Beskow LM, Sandler RS, Weinberger M. Research recruitment through U.S. central cancer registries: balancing privacy and scientific issues. American Journal of Public Health (2006)
What is the effect of different approaches to involving physicians in research recruitment?
- Beskow LM, Millikan RC, Sandler RS, et al. The effect of physician permission versus notification on research recruitment through cancer registries. Cancer Causes & Control (2006)
What are patients’ attitudes and opinions about being identified and recruited through a cancer registry?
- Beskow LM, Sandler RS, Millikan RC, Weinberger M. Patient perspectives on research recruitment through cancer registries. Cancer Causes & Control (2005)
Other Publications on Research Recruitment
- Beskow LM, Botkin JR, Daly M, et al. Ethical issues in identifying and recruiting participants for familial genetic research. American Journal of Medical Genetics (2004)
- Obeid JS, Beskow LM, Rape M, et al. A survey of practices for the use of electronic health records to support research recruitment. Journal of Clinical and Translational Science (2017)
- Beskow LM, Brelsford KM, Hammack CM. Patient perspectives on use of electronic health records for research recruitment. BMC Medical Research Methodology (2019)
- Beskow LM, Brelsford KM, Hammack-Aviran CM. Use of electronic health records for research recruitment: researcher, IRB, and provider perspectives (coming soon)
We are currently collaborating with the University of Louisville and others on a grant addressing international direct-to-participant research recruitment.
- Rothstein MA, Zawati MH, Beskow LM, Brelsford KM, Brothers KB, Hammack-Aviran CM, Hazel JW, Joly Y, Lang M, Saltzman, Knoppers BM. Legal and ethical challenges of international direct-to-participant genomic research: Conclusions and recommendations. Journal of Law, Medicine & Ethics (2019)
Visit Louisville’s project web site for more information.