Other Research Topics

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-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)

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 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