sábado, 6 de julio de 2013

Spotlight: Why We Can't Wait: Health Disparities in Genomic Medicine


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Spotlight: Why We Can't Wait: Health Disparities in Genomic Medicine

minorities with the American flag in the background
New CDC blog post: Why we can’t wait? A public health approach to disparities in genomic medicine
Why we can’t wait: 2013 Conference to eliminate health disparities in genomic medicineExternal Web Site Icon
CDC feature: Breast cancer disparities
CDC Health Equity Matters Newsletter

Features of the Week

Public Health Genomics Implementation- Clickable State Map

US Map
CDC clickable state public health genomic map on implementation of three Tier I genomic applications: Hereditary breast / ovarian cancer, Lynch syndrome and familial hypercholesterolemia.
New CDC blog post: A public health genomic state-by-state clickable map: Accelerating implementation of genomics applications to improve population health
CDC information: Public health action is now needed beyond newborn screening
CDC blog post: Implementing evidence-based genomics recommendations at the intersection of public health and healthcare

Why We Can’t Wait: A Public Health Approach to Health Disparities in Genomic Medicine

Categories: genomics, public health
Selected Conference Speakers and Organizers; Photo credit: Deneb Semprum
In May 2013, I attended and presented at the “Why We Can’t Wait Conference to Eliminate Health Disparities in Genomic MedicineExternal Web Site Icon.”  The conference was organized by the University of Miami and Stanford University, with attendees and speakers from academia, consumer organizations, government agencies, public health, clinical practice, and the private sector. A key rationale for the event is the increasing evidence that the promise of genomic medicine is not being realized equitably, highlighting the importance of dedicated resources and partnerships to address disparities in research and health care (e.g. by race/ethnicity, income and socioeconomic status).
Disparities have long existed in health and healthcare in the United States and around the world. Adobe PDF file [PDF 509.57 KB]External Web Site Icon  These include among many factors basic nutrition, public services such as clean water, educational opportunities, and quality health care. So will genomic medicine ameliorate or worsen existing disparities? This is a central issue for the relatively young field of public health genomics, which is concerned with effective and responsible translation of genome-based science to benefit population health.
six circles surrounding a circle including this text: Ensuring Effective and Responsible Use of Genomic Medicine to Improve Population Health. Circle 1 text: Community. Circle 2 text: Health Care Delivery System. Circle 3 text: Employers and Business. Circle 4 text: The Media. Circle 5 text: Academia. Circle 6 text: Governmental Public Health Infrastucture
adapted from the Institute of Medicine 2003 Report
Several speakers at the conference showed that evidence-based genomic applications that can save lives today are suboptimally implemented across the US population, with remarkable disparities. For example, a recent US analysis of the utilization of epidermal growth factor receptor testingExternal Web Site Icon in patients with lung cancer to drive appropriate therapy showed that only 12% of hospitals ordered the test. Factors associated with increased useExternal Web Site Icon included affiliation with an academic center, residence in a metropolitan county, higher education and income levels. A recent publication showed that there continues to be considerable underutilization of BRCA1/2 testingExternal Web Site Icon in the US, especially among Black and Hispanic womenExternal Web Site Icon, even though the recommendations for genetic services in high risk women were issued by the US Preventive Services Task Force in 2005External Web Site Icon.  It is too early to evaluate how the recent ruling of the Supreme Court on gene patentsExternal Web Site Icon will affect disparities in implementation of BRCA testing.  For Lynch syndrome, a practice surveyExternal Web Site Icon showed that NCI-designated comprehensive cancer centers implemented screening much more than small community-based cancer programs.
As the conferenceExternal Web Site Icon illustrated, a collaborative perspective is needed to ensure the equitable implementation of genomic medicine.  Collaborations among various players represent the existing patchwork of  the “public health system” in the United States, often discussed in reports by the Institute of MedicineExternal Web Site Icon (See Figure 1). Dr. James Marks, a public health leader at the Robert Wood Johnson Foundation once said:  “…no important health problem will be solved by clinical care alone, research alone, or by public health alone- but rather by all public and private sectors working togetherExternal Web Site Icon”. This is most certainly applicable to the burgeoning field of genomic medicine.
Over the past two decades, we have seen a number of collaborative initiatives primarily centered on discovery of genetic causes of disease such as the HapMap projectExternal Web Site Icon, the H3Africa initiativeExternal Web Site Icon, among many others.  In June, 2013, an exciting new global collaboration Adobe PDF file [PDF 269.37 KB]External Web Site Icon was launched to accelerate genomics and clinical data sharing around the world.  I believe the time is ripe for new collaborations to address disparities in implementation of genomic medicine by developing data sources and tools that can inform population-specific health interventions and public policyExternal Web Site Icon.  Public health agencies at the federal and state levels have a keen interest in ameliorating health disparities in genomic medicine. Work highlighted by Michigan, Georgia and Florida at the conferenceExternal Web Site Icon and by Connecticut and Oregon illustrates public health contributions. For example state cancer registries are being used to identify cases of certain cancers for additional research (e.g. BRCA1) and for reporting information to healthcare institutions about screening for recommended tests (e.g. Lynch Syndrome). More broadly, public health programsExternal Web Site Icon can work with other partners to i) assess the presence and quantify magnitude of population disparities in genomic medicine implementation; ii) develop policies and guidelines to address such disparities and iii) assure appropriate implementation of validated genomic applications using a combination of policy change, provider and public education, and interactions with health care and other coalitions.  In 2009, CDC outlined the elements of a collaboration, the Genomic Applications in Practice and Prevention Network (GAPPNet), a network of interested people and organizations passionate about translation of genomics research into population health benefits (through knowledge synthesis, implementation science and stakeholder engagement).              
We live in an exciting time of great scientific discoveries and “big data”. The leading edge of next generation sequencing has reached clinical practiceExternal Web Site Icon. Almost 10 years ago, in a IOM workshop exploring the intersection of genomics and public health, Dr William FoegeExternal Web Site Icon, a prominent public health leader, exclaimed “the challenge to public health genomics is to overcome inequitable allocation of benefits, the tragedy that would befall us if we made the promise of genetics only for those who could afford it and not for all of society.”  We need to reap the health benefits of new scientific discoveries for all. This is simply “why we can’t wait.”

Health Equity Matters

A quarterly e-newsletter in which the Centers for Disease Control and Prevention's (CDC) Office of Minority Health and Health Equity (OMHHE) shares news, perspectives and progress in the science and practice of health equity.
Leandris C. Liburd, PhD, MPH, MA
Leandris C. Liburd, PhD, MPH, MA
Associate Director for Minority Health and Health Equity, CDC/ATSDR
Welcome to Health Equity Matters, an electronic newsletter intended to promote awareness of minority health and health equity issues that affect our work at CDC and in the broader public health community, support the achievement of our goal to eliminate health disparities, and foster ongoing communication and collaboration.

This year, I was honored to be invited to the 34th Annual Minority Health Conference at the University of North Carolina (UNC) Gillings School of Public Health to deliver the Victor J. Schoenbach Health Disparities Keynote Lecture. The Minority Health Conference at UNC has the distinction of being the largest and longest-running student-led health conference in the nation. Co-chaired by two amazing young women - Chassidy Hanley and Adrienne Gill-, the theme of the 2013 conference was “Constructing the Foundation for Health Equity.” The “Millennial generation” of public health workers, researchers, and scholars is entering the workforce at a time when the urgency of addressing the root causes of health inequities is clear while the path to health equity is still being paved.

In this issue of Health Equity Matters, we highlight some of CDC’s efforts to prepare the incoming workforce, as well as national initiatives intending to enhance cultural and linguistic competence. In addition to the regular features included in Health Equity Matters, don’t miss the guest commentary provided by Dr. Lynda Anderson, Director of CDC’s Healthy Aging program, and a brief overview of the new Cochrane Public Health Group report - Community Coalition-Driven Interventions to Reduce Health Disparities – A Systematic Review.

We hope you will enjoy this issue! Special thanks to all of our colleagues across CDC who provide the content for Health Equity Matters!

CDC's Office of Minority Health & Health Equity (OMHHE) We welcome your comments, and encourage you to continue to circulate the newsletter among your colleagues and friends.
Leandris C. Liburd, PhD, MPH, MA
Associate Director for Minority Health and Health Equity, CDC/ATSDR
Office of Minority Health & Health Equity (OMHHE)



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