Format

Send to

Choose Destination
Genet Med. 2014 Oct;16(10):727-35. doi: 10.1038/gim.2014.26. Epub 2014 Mar 13.

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

Author information

1
1] Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA [2] Harvard Medical School, Boston, Massachusetts, USA [3] Department of Medicine, Brigham & Women's Hospital, Boston, Massachusetts, USA.
2
Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
3
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
4
1] Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA [2] Penn Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
5
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
6
1] Harvard Medical School, Boston, Massachusetts, USA [2] Department of Medicine, Brigham & Women's Hospital, Boston, Massachusetts, USA.
7
Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
8
1] University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA [2] UNC Lineberger Comprehensive Cancer Center, Chapel Hill, North Carolina, USA.
9
Department of Pharmacy, Pharmaceutical Outcomes Research and Policy Program, University of Washington, Seattle, Washington, USA.

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.

PMID:
24625446
PMCID:
PMC4163120
DOI:
10.1038/gim.2014.26
[Indexed for MEDLINE]
Free PMC Article

Publication types, MeSH terms, Grant support

Publication types

MeSH terms

Grant support

Supplemental Content

Full text links

Icon for Nature Publishing Group Icon for PubMed Central
Loading ...
Support Center