Genetics Discrimination

Updated On Feb 25, 2022

This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.

Introduction

Genetic discrimination occurs when people are treated differently because they have (or may have) a genetic predisposition to disease.

For a more in-depth discussion of genetic discrimination, please visit the National Human Genome Research Institute’s (NHGRI) website, which includes information on GINA, implications of GINA, employee wellness programs, and related laws.

Examples that relate to concerns of genetic discrimination:

  • Sally has a family history of breast cancer thus she decides to have genetic testing to find out if she is at higher risk of developing breast cancer. When the genetic test identifies her as being “high risk” for developing cancer, her life insurance company doubles her insurance premium.
  • Tim has been with a computer company for two years. He is on a team of technicians that goes to client’s companies to troubleshoot their computer problems. Tim’s father is going blind presumed secondary to a genetic condition. Worried that Tim will also start to go blind, Tim’s employer changes his work assignment. Tim is no longer on the troubleshooting team; instead, he is told to stay at the home office and answer phones at the receptionist desk. Tim’s boss thinks this is best because if Tim were to also go blind, this would be a job that Tim could do.
  • Leslie’s company has an insurance plan with a wellness program. The wellness program encourages people to adopt healthy behaviors, such as not smoking, eating healthy, and exercising. The wellness program gives everyone a $50 deduction off their insurance premiums if they do certain wellness activities, such as visiting the primary care provider once a year. The wellness program also wants to give everyone a $200 deduction who has genetic testing through their program. The genetic testing will identify people who are at higher risk for certain illnesses. Leslie doesn’t want to have the test, but cannot afford to NOT have the testing if it means missing out on a $200 deduction.

Fear of discrimination can impact a person’s decision to obtain seek genetic medical care or genetic testing. Because of worries about genetic discrimination, the US enacted the Genetic Information Nondiscrimination Act of 2008 (GINA). More information on GINA can be found on the National Human Genome Research Institute (NHGRI) webpage about genetic discrimination.

GINA generally prohibits health insurance companies from using an individual’s (or their family’s) genetic information for decisions regarding coverage, rates, or preexisting conditions. GINA also prohibits most employers from using genetic information for hiring, firing, or promotion decisions, and for any decisions regarding terms of employment. Exceptions to GINA include many small employers, military service members, federal employees, or the Indian Health Service.

Legislation and Regulation

The federal government attempted to address concerns of genetic discrimination through the passage of the Genetic Information Nondiscrimination Act of 2008 (GINA). More information on this act can be found on the National Human Genome Research Institute (NHGRI) website which provides an overview of GINA and describes what protections GINA does and does not offer. Additional protection can be found in other legislation, such as the Affordable Care Act and the Americans with Disabilities Act. A summary of those protections can be found elsewhere on the NHGRI website.

Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.

Policy Positions

Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on genetic discrimination. Explore these position statements below.

 

Position Statements by Organizations
Points to Consider in Preventing Unfair Discrimination Based on Genetic Disease Risk: A Position Statement of the American College of Medical Genetics
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Discrimination
Date
November 1, 2001
Supporting Genetic Nondiscrimination Since the 1990s
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination
Date
December 1, 2001
Position Statement on Genetic Nondiscrimination
Organization
American Health Information Management Association (AHIMA)
Subject
Discrimination
Date
March 1, 2007
Responding to Misguided Beliefs
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination
Date
November 1, 2007
Advising on the Implementation of GINA
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Genetic Testing Genetic Privacy
Date
December 18, 2008
Nondiscrimination
Organization
National Society of Genetic Counselors (NSGC)
Subject
Discrimination Genetic Privacy
Date
June 1, 2011
Protecting Genetic Privacy in the Workplace
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Workplace
Date
March 20, 2015
Joint Letter to Congress in Support of Genetic Information Non-discrimination Act (GINA)
Organization
American Academy of Family Physicians (AAFP)
Subject
Genetic Privacy Legal Discrimination
Date
April 21, 2015
Supporting Genetic Nondiscrimination in Canada
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Legal
Date
May 30, 2016
Workplace Wellness Programs
Organization
National Society of Genetic Counselors (NSGC)
Subject
Discrimination Genetic Privacy
Date
September 13, 2017
ACMG Statement on Diversity and Inclusivity
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Discrimination
Date
October 17, 2017
Disability
Organization
National Society of Genetic Counselors (NSGC)
Subject
Discrimination
Date
December 12, 2017
Protecting Genetic Privacy of Immigrant Families
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Legal Genetic Privacy
Date
August 8, 2018
Denouncing the Misuse of Genetics
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination
Date
November 1, 2018
Prohibiting Genetic Discrimination
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Genetic Privacy
Date
January 2, 2019
Statement Regarding Concepts of “Good Genes” and Human Genetics
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Diversity
Date
September 24, 2020
GSA’s commitment to dismantling racism in science: building a plan for sustained action
Organization
Genetics Society of America
Subject
Diversity Discrimination
Date
June 16, 2020

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