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Comment & Response
December 25, 2018

Providing Individual Research Results to Participants—Reply

Author Affiliations
  • 1Duke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina
  • 2Duke Forge, Duke University School of Medicine, Durham, North Carolina
JAMA. 2018;320(24):2601. doi:10.1001/jama.2018.18111

In Reply It is promising that institutes such as the NHGRI have chosen to invest in projects addressing the return of individual research results, as Dr Kaufman and colleagues highlight. Conducting rigorous research to answer the “what, when, and how” to return these results is important to move the field forward.1 Although some extant literature exists as identified in their letter, most published studies have focused on the return of genetics research results, which is an important area for consideration. However, empirical data are lacking on the return of other types of results, even those as simple as routine laboratory results. As the National Academies of Sciences, Engineering, and Medicine report recommends, an expanded empirical evidence base relevant to the return of individual research results is needed.2 The report also recommends mechanisms to accelerate evidence generation, such as research sponsors requiring applications to address return of results.