Offering Research Results to Participants and Families
Empirical Publications:
- Beskow LM. Considering the nature of individual research results. American Journal of Bioethics (2006)
- Beskow LM, Smolek SJ. Prospective biorepository participants’ perspectives on access to research results. Journal of Empirical Research on Human Research Ethics (2009)
- Beskow LM, O’Rourke PP. Return of genetic research results to participants and families: IRB perspectives and roles. Journal of Law, Medicine & Ethics (2015)
- Fernandez CV, O’Rourke PP, Beskow LM. Canadian Research Ethics Board leadership attitudes to the return of genetic research results to individuals and their families. Journal of Law, Medicine & Ethics (2015)
Foundational Publications:
- Beskow LM, Burke W. Offering individual genetic research results: context matters. Science Translational Medicine (2010)
- Beskow LM, Burke W, Fullerton SM, Sharp RR. Offering aggregate results to participants in genomic research: benefits and challenges. Genetics in Medicine (2012)
Working Group Publications:
- Fabsitz RR, McGuire AL, Sharp RR, et al. Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from an NHLBI Working Group. Circulation: Cardiovascular Genetics (2010)
- Wolf SM, Crock BN, Van Ness B, et al. Managing incidental findings and research results in genomic research involving biobanks and archived datasets. Genetics in Medicine (2012)
- Wolf SM, Branum R, Koenig BA, et al. Returning a research participant’s genetic results to relatives: analysis and recommendations. Journal of Law, Medicine & Ethics (2015)
- Wolf SM, Scholtes E, Koenig BA, et al. Pragmatic tools for sharing genomic research results with the relatives of living and deceased research participants. Journal of Law, Medicine & Ethics (2018)
Pragmatic Trials
- McKinney R, Beskow LM, Ford D, et al. Use of altered consent in pragmatic clinical research. Clinical Trials (2015)
- Anderson ML, Califf RM, Sugarman J, et al. Ethical and regulatory issues in pragmatic cluster randomized trials in contemporary health systems. Clinical Trials (2015)
- Weinfurt KP, Bollinger JM, Brelsford KM, et al. Patients' views concerning research on medical practices: Implications for consent. AJOB Empirical Bioethics (2016)
- Weinfurt KP, Bollinger JM, Brelsford KM, et al. Comparison of approaches for notification and authorization in pragmatic clinical research evaluating commonly used medical practices. Medical Care (2017)
- Beskow LM, Lindsell CJ, Rice TW. Consent for acute care research and the regulatory “gray zone.” American Journal of Bioethics (2020)
Unregulated Research Using mHealth Apps & Devices
- Hammack CM. Ethical use of social media data: beyond the clinical context. Hastings Center Report (2019)
- Hammack-Aviran CM, Brelsford KM, Beskow LM. Ethical considerations in the conduct of unregulated mHealth research: expert perspectives. Journal of Law, Medicine & Ethics (2020)
- Beskow LM, Hammack-Aviran CM, Brelsford KM, O’Rourke PP. Expert perspectives on oversight for unregulated mHealth research: empirical data and commentary. Journal of Law, Medicine & Ethics (2020)
- Rothstein MA, Wilbanks JT, Beskow LM, Brelsford KM, Brothers KB, Doerr M, Hammack-Aviran CM, McGowen ML, Tovino SA. Unregulated health research using mobile devices: ethical considerations and policy recommendations. Journal of Law, Medicine & Ethics (2020)
Exploring Choice of Law Challenges in Multi-Site Research
We are just starting a new project in collaboration with Georgia State University’s Center for Law, Health & Society on to explore choice of law challenges in multi-site precision medicine research.
Additional Topics
Examples of other projects on which we are currently collaborating include:
- The All of Us Research Program as members of various cores and committees
- The ethics of overlapping surgery with Dr. Alex Langerman
- The effect of comprehensive palliative care services with Dr. Ricky Shinall
- Treatment refusal, non-adherence, and abandonment in pediatric oncology with Dr. Dan Benedetti
- Sharing qualitative research data with Dr. James DuBois at Washington University
- Comparative effectiveness and harms of treatments for prostate cancer with Dr. Dan Barocas
- Trauma surgery ethics with Dr. Allan Peetz
Interested in Collaborating?
In addition to our own research, we regularly work closely with others to design and conduct innovative research to inform empirical questions in biomedical ethics.