Conceptualization of utility in translational clinical genomics research.

Autor:	Smith HS; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA. Electronic address: hadley.smith@bcm.edu., Brothers KB; Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY 40202, USA., Knight SJ; Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT 84108, USA., Ackerman SL; Department of Social and Behavioral Sciences, University of California, San Francisco, San Francisco, CA 94108, USA., Rini C; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL 60611, USA., Veenstra DL; Comparative Health Outcomes, Policy & Economics Institute, University of Washington School of Pharmacy, Seattle, WA 98195, USA., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA., Wilfond BS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute and Hospital, Seattle, WA 98105, USA; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA 98105, USA., Malek J; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.
Jazyk:	angličtina
Zdroj:	American journal of human genetics [Am J Hum Genet] 2021 Nov 04; Vol. 108 (11), pp. 2027-2036. Date of Electronic Publication: 2021 Oct 22.
DOI:	10.1016/j.ajhg.2021.08.013
Abstrakt:	Prior to integration into clinical care, a novel medical innovation is typically assessed in terms of its balance of benefits and risks, often referred to as utility. Members of multidisciplinary research teams may conceptualize and assess utility in different ways, which has implications within the translational genomics community and for the evidence base upon which clinical guidelines groups and healthcare payers make decisions. Ambiguity in the conceptualization of utility in translational genomics research can lead to communication challenges within research teams and to study designs that do not meet stakeholder needs. We seek to address the ambiguity challenge by describing the conceptual understanding of utility and use of the term by scholars in the fields of philosophy, medicine, and the social sciences of decision psychology and health economics. We illustrate applications of each field's orientation to translational genomics research by using examples from the Clinical Sequencing Evidence-Generating Research (CSER) consortium, and we provide recommendations for increasing clarity and cohesion in future research. Given that different understandings of utility will align to a greater or lesser degree with important stakeholders' views, more precise use of the term can help researchers to better integrate multidisciplinary investigations and communicate with stakeholders. Competing Interests: Declaration of interests A.L.M. is a member of The American Journal of Human Genetics editorial board. The other authors declare no competing interests. (Copyright © 2021 American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.)
Databáze:	MEDLINE
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