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20years

The Genetic Information Nondiscrimination Act (GINA)

January 31, 2015/in Cancer News, Cancer Policy Blog Quality Cancer Care, Survivorship Care NCCS News /by actualize

"People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status.”“People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status.” Read more from The Imperatives for Quality Cancer Care: 20 Years Later Series

This post is part of a special blog series: “The Imperatives for Quality Cancer Care: 20 Years Later.” Read more from this series.

The first imperative states, “People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status.” We have focused our commentary this month on the impact of the Affordable Care Act, but there is another piece of legislation that is important to consider, the Genetic Information Nondiscrimination Act (GINA), which was signed into law in 2008.

GINA prohibits health insurance and employment discrimination on the basis of genetic information. Patient advocates and health care providers who were members of the Coalition for Genetic Fairness, led by the Genetic Alliance, were key to passage of the bill. In a new commentary in the New England Journal of Medicine, “GINA, Genetic Discrimination, and Genomic Medicine,” Robert Green, Denise Lautenbach, and Amy L. McGuire evaluate the effects of GINA six years after implementation. The authors consider whether “succeeded in its twin missions of preventing discrimination and alleviating public fears about the potential for discrimination” and conclude that the answer is not clear. There are some of the gaps in the law, one of which was remedied by the Affordable Care Act. Awareness of the law and its protections is low, and “there’s some evidence that fear of discrimination may be preventing some people from participating in translational research studies that are exploring the real-world consequences of utilizing genomic information.”

The authors conclude by noting that the science is rapidly evolving and genetic variants may predict, but not determine, health outcomes. “Eventually, the notion of immutable genetic risks may become obsolete, and it may be less important to grant genetic information special protection than to protect everyone from all forms of medical discrimination. As all medicine in a sense becomes genomic medicine, perhaps the genetic nondiscrimination secured by GINA will translate into nondiscrimination in all of medicine.”

Tags: 20 Years Later, cancer care, Cancer Survivorship, genetic testing, patient first, quality
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  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Survivorship Champions
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • Ellen L. Stovall Award
      • Nominations
      • Honorees
      • Sponsors
      • Committees
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Cancer Policy Roundtable
      • Spring 2021 Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute