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

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.

SUBMITTER: Gray SW

PROVIDER: S-EPMC4163120 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature

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

Gray Stacy W SW Martins Yolanda Y Feuerman Lindsay Z LZ Bernhardt Barbara A BA Biesecker Barbara B BB Christensen Kurt D KD Joffe Steven S Rini Christine C Veenstra David D McGuire Amy L AL

Genetics in medicine : official journal of the American College of Medical Genetics 20140313 10

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 G ...[more]

PMID: 24625446

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Project description:BackgroundGlobal health is a term often used interchangeably with international health due to overlapping similarities and unclear distinctions. While some international health supporters argue that global health as a field is unnecessary as it is simply a duplicate of international health, global health supporters argue that global health is unique; for instance, it actively includes elements of empowerment and promotes cross-border collaboration.ObjectiveTo investigate differences and similarities in research representing the fields of global and international health.MethodsWe analyzed all the articles published in 2017 in two comparable academic journals representing the fields of global health (Annals of Global Health, AGH) and international health (International Health Journal, IHJ). Abstracted data included: research design and methods, income status of country of study, empowerment recommendations for practice, participation and research collaboration.FindingsMost studies in both AGH and IHJ used quantitative research methods but were significantly more common in IHJ (70%) compared to AGH (48%), whereas mores studies in AGH (17%) than IHJ (9%) used mixed methods. The majority of studies in both journals focused on low- or lower-middle income countries whereas more AGH studies (16%) focused on high-income countries compared to the IHJ studies (4%). It was more common in the AGH studies to make empowerment recommendations (90%) and to include stakeholders/users in the study (40%) compared to the IHJ studies (75% empowerment recommendations and 18% stakeholder/user participation). No difference was observed regarding cross-border research collaboration.ConclusionsThis study does not show great differences between global health and international health research; however, there are still some differences indicating that global health emphasises different aspects of research compared to international health. More research is necessary to understand whether and how the distinctions between the definitions of global and international health are applied in real life, in research and beyond.

Dataset Information

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

Publications

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

Similar Datasets

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