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From preferences to policies? Considerations when incorporating empirical ethics findings into research policymaking
  1. Emily A Largent1,
  2. Stephanie R Morain2
  1. 1 Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA
  2. 2 Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA
  1. Correspondence to Professor Emily A Largent, Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA 19104, USA; elargent{at}pennmedicine.upenn.edu

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Interest in the use of medical data for health research is increasing. Yet, as Elizabeth Ford and colleagues rightly note, there are open questions about the suitability of existing ethical and regulatory oversight frameworks for these research approaches. In their feature article, ‘Should free text data in electronic medical records be shared for research? A citizen’s jury study in the United Kingdom’, Ford et al report the results of a deliberative engagement study in which 18 members of the public were asked whether and under what conditions free text data from medical records should be shared for research purposes. The authors’ explicit aim was to inform national policy on sharing medical text.

Public attitudes—stated otherwise, the attitudes of patients whose medical information will ultimately be used under any data sharing policy—are a necessary input into ethical and regulatory decision-making about use of medical data for health research. Though public attitudes will rarely be determinative, they must be weighed in order to uphold the ethical principle of respect for persons.1 Ford et al’s article is, therefore, an important contribution to …

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Footnotes

  • Twitter @smorain

  • Contributors EL and SRM shared equally in conceiving the idea for writing and substantively revising this commentary.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Commissioned; internally peer reviewed.

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