September 21, 2018: Returning Individual Research Results to Participants: Guidance for a New Research Paradigm (Jeffrey Botkin, MD, MPH, Consuelo Wilkins, MD, MSCI)

Speakers

Jeffrey R. Botkin, MD, MPH
Associate Vice President for Research
Professor of Pediatrics
University of Utah School of Medicine

Consuelo H. Wilkins, MD, MSCI
Associate Professor of Medicine
Vanderbilt University Medical Center and Meharry Medical College

Topic

Returning Individual Research Results to Participants: Guidance for a New Research Paradigm

Keywords

Return of results; Health data; Data sharing; Research ethics

Key Points

  • Historically, returning individual research results to study participants has not been a standard or common practice.
  • The National Academies of Sciences, Engineering, and Medicine (NASEM) recently spearheaded a committee charged with determining if and when it is appropriate to return individual research results to research participants.

Discussion Themes

Guidelines have not yet been established for Centers for Medicare and Medicaid Services (CMS) or other payers with regard to how research results can be used to support further clinical testing.

There are challenges in communicating results to participants. Determining a “15-second takeaway” message is a practical step and best practice for alleviating some of the challenges and can help guide the communication process.

More conversations are needed to determine how to return results for cluster-randomized trials.

For more information, view the NASEM consensus report.

 

Tags

@DrCHWilkins, @NASEM_Health #returnofresults, #healthdata, #pctGR,

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