Social and behavioral research in genomic sequencing: approaches from the Clinical Sequencing Exploratory Research Consortium Outcomes and Measures Working Group

members of the CSER Consortium Outcomes and Measures Working Group

Research output: Contribution to journalReview articlepeer-review

58 Scopus citations

Abstract

The routine use of genomic sequencing in clinical medicine has the potential to dramatically alter patient care and medical outcomes. To fully understand the psychosocial and behavioral impact of sequencing integration into clinical practice, it is imperative that we identify the factors that influence sequencing-related decision making and patient outcomes. In an effort to develop a collaborative and conceptually grounded approach to studying sequencing adoption, members of the National Human Genome Research Institute's Clinical Sequencing Exploratory Research Consortium formed the Outcomes and Measures Working Group. Here we highlight the priority areas of investigation and psychosocial and behavioral outcomes identified by the Working Group. We also review some of the anticipated challenges to measurement in social and behavioral research related to genomic sequencing; opportunities for instrument development; and the importance of qualitative, quantitative, and mixed-method approaches. This work represents the early, shared efforts of multiple research teams as we strive to understand individuals’ experiences with genomic sequencing. The resulting body of knowledge will guide recommendations for the optimal use of sequencing in clinical practice.

Original languageEnglish
Pages (from-to)727-735
Number of pages9
JournalGenetics in Medicine
Volume16
Issue number10
DOIs
StatePublished - Oct 2014
Externally publishedYes

Keywords

  • behavior
  • genome sequencing
  • measures
  • outcomes
  • psychosocial

Fingerprint

Dive into the research topics of 'Social and behavioral research in genomic sequencing: approaches from the Clinical Sequencing Exploratory Research Consortium Outcomes and Measures Working Group'. Together they form a unique fingerprint.

Cite this