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National Academies Press
Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop

Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop


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Genomic medicine is defined as the routine use of genomic information about an individual as part of his or her clinical care as well as the health outcomes and policy implications of that clinical use. It is one approach that has the potential to improve the quality of health care by allowing practitioners to tailor prevention, diagnostic, and treatment strategies to individual patients. In recent years, research breakthroughs, technological advances, and the decreasing cost of DNA sequencing have led to the wider adoption of genomic medicine. However, as with the introduction of new technologies into health care, there are concerns that genetic and genomic testing and services will not reach all segments of the population both now and in the near future, and there remains a gap in knowledge regarding potential health care disparities in genomic medicine and precision health approaches.

On June 27, 2018, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine the gaps in knowledge related to access to genomic medicine and to discuss health care disparities and possible approaches to overcoming the disparate use of genomic medicine among populations. Workshop participants discussed research on access to genetics and genomics services in medically underserved areas, model programs of care for diverse patient populations, and current challenges and possible best practices for alleviating health care disparities as they relate to genomics-based approaches. This publication summarizes the presentations and discussions from the workshop.

Product Details

ISBN-13: 9780309485258
Publisher: National Academies Press
Publication date: 01/28/2019
Pages: 126
Product dimensions: 6.00(w) x 9.00(h) x (d)

Table of Contents

Acronyms and Abbreviations xx

1 Introduction and Overview 1

Overview of the Workshop 3

Organization of the Workshop and Proceedings 4

Setting the Stage: An Introduction to Genomic Medicine and Disparities 5

2 Exploring the Barriers to Accessing Genomic and Genetic Services 11

Family Secrets Kill Families: A Personal Story About Genetic Testing and Communication 13

Examining Potential Drivers of Health Care Disparities 14

Patient-Reported Barriers to Genomic Testing 16

Challenges Facing Rural Communities 19

Reaction and Commentary: The Value of a Patient-Centered Health Care System 20

3 The Role of Health Systems in Delivering Equitable Access 23

Veterans Health Administration Genomic Care 24

Providing Genomic Medicine in a Resource-Constrained System 26

A Population Health Approach to Cancer Genetic Risk Assessment and Health Disparities 29

Discussion 32

4 How Can Providers and Payers Make Genomic Medicine More Accessible? 35

Finding Ways for Genomic Medicine to Reduce Existing Health Care Disparities 36

Disparities in Access to Precision Medicine: A View from Psychiatry 37

Ensuring That Genomic Medicine Is Provided Equitably 40

The Role of Large Employers in Addressing Disparities and Improving Access to Care 42

Discussion 43

5 Exploring Innovative Solutions and Models of Success 47

Alternative Models of Clinical Service Delivery and the Impact of Disparities in BRCA Testing 49

Access and Communication: The Bridge Connecting Genetic Discoveries with Minority Patients 51

Recruiting Minority Populations in Genomic. Studies Through Community-Based Outreach 54

Indiana Genomics Implementation Opportunity for the Underserved 56

Discussion 58

6 Considering Unmet Needs to Alleviate Disparities in Genomic Medicine 61

Overcoming Challenges to Increase Access to Genetics and Genomics 61

Possible Ways to Improve Diversity and Reduce Health Care Disparities in Genomic Medicine 64

Final Thoughts 70

References 71


A Summary of the Pre-Workshop Twitter Chat 75

B Workshop Agenda 79

C Speaker Biographical Sketches 85

D Statement of Task 97

E Registered Attendees 99

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