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Health Aff (Millwood). 2018 May;37(5):809-816. doi: 10.1377/hlthaff.2017.1578.

Lessons Learned From A Study Of Genomics-Based Carrier Screening For Reproductive Decision Making.

Author information

1
Benjamin S. Wilfond ( benjamin.wilfond@seattlechildrens.org ) is director of the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, and of the Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, all in Seattle, Washington.
2
Tia L. Kauffman is a project director at the Center for Health Research, Kaiser Permanente Northwest, in Portland, Oregon.
3
Gail P. Jarvik is a professor in the Division of Medical Genetics, Department of Medicine, and in the Department of Genome Sciences, both at the University of Washington.
4
Jacob A. Reiss is a medical geneticist at the Center for Health Research, Kaiser Permanente Northwest.
5
C. Sue Richards is a professor in the Knight Diagnostic Laboratories, Oregon Health & Science University, in Portland.
6
Carmit McMullen is a senior investigator at the Center for Health Research, Kaiser Permanente Northwest.
7
Marian Gilmore is a genetic counselor in the Department of Medical Genetics at Kaiser Permanente Northwest.
8
Patricia Himes is a genetic counselor in the Department of Medical Genetics at Kaiser Permanente Northwest.
9
Stephanie A. Kraft is an acting assistant professor in the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, and in the Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine.
10
Kathryn M. Porter is a research scientist in the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute.
11
Jennifer L. Schneider is a research associate III at the Center for Health Research, Kaiser Permanente Northwest.
12
Sumit Punj is a senior clinical scientist in the Clinical Genomics Program, GeneDx, in Gaithersburg, Maryland.
13
Michael C. Leo is an investigator at the Center for Health Research, Kaiser Permanente Northwest.
14
John F. Dickerson is an investigator at the Center for Health Research, Kaiser Permanente Northwest.
15
Frances L. Lynch is a senior investigator at the Center for Health Research, Kaiser Permanente Northwest.
16
Elizabeth Clarke is a research associate III at the Center for Health Research, Kaiser Permanente Northwest.
17
Alan F. Rope is a staff physician at Northwest Permanente, Kaiser Permanente Northwest.
18
Kevin Lutz is publications manager at the Center for Health Research, Kaiser Permanente Northwest.
19
Katrina A. B. Goddard is associate director, research programs, at the Center for Health Research, Kaiser Permanente Northwest.

Abstract

Genomics-based carrier screening is one of many opportunities to use genomic information to inform medical decision making, but clinicians, health care delivery systems, and payers need to determine whether to offer screening and how to do so in an efficient, ethical way. To shed light on this issue, we conducted a study in the period 2014-17 to inform the design of clinical screening programs and guide further health services research. Many of our results have been published elsewhere; this article summarizes the lessons we learned from that study and offers policy insights. Our experience can inform understanding of the potential impact of expanded carrier screening services on health system workflows and workforces-impacts that depend on the details of the screening approach. We found limited patient or health system harms from expanded screening. We also found that some patients valued the information they learned from the process. Future policy discussions should consider the value of offering such expanded carrier screening in health delivery systems with limited resources.

KEYWORDS:

carrier screening; genetic counseling; health policy

PMID:
29733724
DOI:
10.1377/hlthaff.2017.1578

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