Clinical genome sequencing and population preferences for information about 'incidental' findings-From medically actionable genes (MAGs) to patient actionable genes (PAGs).

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  • Author(s): Ploug T;Ploug T; Holm S; Holm S; Holm S; Holm S
  • Source:
    PloS one [PLoS One] 2017 Jul 03; Vol. 12 (7), pp. e0179935. Date of Electronic Publication: 2017 Jul 03 (Print Publication: 2017).
  • Publication Type:
    Journal Article
  • Language:
    English
  • Additional Information
    • Source:
      Publisher: Public Library of Science Country of Publication: United States NLM ID: 101285081 Publication Model: eCollection Cited Medium: Internet ISSN: 1932-6203 (Electronic) Linking ISSN: 19326203 NLM ISO Abbreviation: PLoS One Subsets: MEDLINE
    • Publication Information:
      Original Publication: San Francisco, CA : Public Library of Science
    • Subject Terms:
      Genome, Human* ; Incidental Findings*; Denmark ; Focus Groups ; Humans ; Surveys and Questionnaires
    • Abstract:
      Whole genome or exome sequencing is increasingly used in the clinical contexts, and 'incidental' findings are generated. There is need for an adequate policy for the reporting of these findings to individuals. Such a policy has been suggested by the American College of Medical Genetics and Genomics (ACMG). We argue that ACMG's policy is overly paternalistic, and that an adequate policy must take into account population preferences. We conducted a choice based conjoint survey of population preferences for reporting in a representative sample of the Danish population. In a 12 task survey respondents were asked about their preference for reporting in relation to three scenarios with seven different attributes. Of 1200 respondents 66.4% participated. We show that population preferences for reporting differs from ACMG's recommendations, and suggest a new policy based on both medically and patient actionable genes.
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    • Publication Date:
      Date Created: 20170704 Date Completed: 20171006 Latest Revision: 20181113
    • Publication Date:
      20221213
    • Accession Number:
      PMC5495206
    • Accession Number:
      10.1371/journal.pone.0179935
    • Accession Number:
      28671958