Clinical genome sequencing and population preferences for information about ‘incidental’ findings—From medically actionable genes (MAGs) to patient actionable genes (PAGs)
Open Access
- 3 July 2017
- journal article
- research article
- Published by Public Library of Science (PLoS) in PLOS ONE
- Vol. 12 (7), e0179935
- https://doi.org/10.1371/journal.pone.0179935
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.Keywords
This publication has 47 references indexed in Scilit:
- An Update to Returning Genetic Research Results to Individuals: Perspectives of the Industry Pharmacogenomics Working GroupBioethics, 2014
- Finding common groundGenetics in Medicine, 2013
- Incidental findings in clinical genomics: a clarificationGenetics in Medicine, 2013
- Mandatory Extended Searches in All Genome SequencingPublished by American Medical Association (AMA) ,2013
- The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practiceJournal of Community Genetics, 2013
- Genetics professionals' perspectives on reporting incidental findings from clinical genome‐wide sequencingAmerican Journal of Medical Genetics Part A, 2013
- Public Perspectives About Pharmacogenetic Testing and Managing Ancillary FindingsGenetic Testing and Molecular Biomarkers, 2012
- Public Perspectives on Returning Genetics and Genomics Research ResultsPublic Health Genomics, 2011
- Understanding Incidental Findings in the Context of Genetics and GenomicsJournal of Law, Medicine & Ethics, 2008
- 0The Question Not Asked: The Challenge of Pleiotropic Genetic TestsKennedy Institute of Ethics Journal, 1998