Presentation of Genetic Information Non-discrimination Act

1. Seven-year-old Danny is in perfect health, but a genetic tests reveals that
he has a gene predisposing him to a heart disorder. Even though he takes
medication that lowers his risk of a heart attack, he is denied health
insurance.
His insurance company argues that since his gene has been present since
birth, this qualifies as a pre-existing medical condition
Cases to understand Genetic Discrimination

2. Lisa’s young son has been having difficulty in school. Suspecting a learning
disability, she consults her doctor. Her doctor performs some genetic tests,
and tells her that Jonathan has Fragile X Syndrome, an inherited form of
mental retardation.
Her insurance company eliminates Jonathan’s health coverage, claiming
that his disability represents a pre-existing condition. Lisa searches
unsuccessfully for another company that will be willing to insure her son. She
ultimately quits her job so that she can qualify for Medicaid

3. Mary has a family history of breast cancer: both her mother and her aunt have
been diagnosed with it. She worries about her future and is considering getting
tested for BRCA-1, a gene associated with some forms of hereditary breast
cancer.
Ultimately, she decides not to take advantage of the test, because she fears a
positive result will jeopardize her chances for promotion at her law firm

4. What is genetic discrimination?
Genetic discrimination occurs when people are treated differently by
their employer or insurance company because they are perceived
to have a gene mutation(s) that causes or increases the risk of
an inherited disorder.
“Genetic discrimination should be defined as when an
individual is subjected to negative treatment, not as a result of
the individual’s physical manifestation of disease or disability,
but solely because of the individual’s genetic composition.”
Fear of discrimination is a common concern among people
considering genetic testing.

5. Genetic discrimination takes different forms depending on the country and the
protections that have been taken to limit genetic discrimination, such as GINA in the
United States that protects people from being barred from working or from receiving
healthcare as a result of their genetic makeup

6. Several laws at the federal and state levels help protect people against
genetic discrimination.
In particular, a federal law called the Genetic Information
Nondiscrimination Act (GINA) of 2008 is designed to protect people
from this form of discrimination in USA.
GINA has two parts:
Title I, which prohibits genetic discrimination in health insurance.
Title II, which prohibits genetic discrimination in employment
Genetic Information Nondiscrimination Act

7. Title I makes it illegal for health insurance providers to use or
require genetic information to make decisions about a person's
insurance eligibility or coverage.
Title I amends the Employee Retirement Income Security Act of
1974 (ERISA), the Public Health Service Act (PHSA), and the Internal
Revenue Code (IRC), through the Health Insurance Portability and
Accountability Act of 1996 (HIPAA), as well as the Social Security
Act, to prohibit health insurers from engaging in genetic
discrimination.
The regulations governing the implementation of GINA in health
insurance took effect on December 7, 2009 and are implemented
by the Internal Revenue Service, Department of Labor, and
Department of Health and Human Services (HHS).
GINA amends HIPAA to clarify that genetic information is health
information and provides a finalized rule that went into effect
March 26, 2013

8. GINA prohibits employers or other covered entities (employment
agencies, labor organizations etc. from requiring or requesting
genetic information and/or genetic tests as a condition of
employment
Title II makes it illegal for employers to use a person's genetic
information when making decisions about hiring, promotion, and
several other terms of employment.
Title II of GINA is implemented by the Equal Employment
Opportunity Commission (EEOC) and prevents employers from using
genetic information in employment decisions such as hiring, firing,
promotions, pay, and job assignments
The regulations governing implementation of GINA in employment
took effect on January 10, 2011.

9. Where GINA Does Not Apply
GINA does not apply to employers with fewer than 15 employees.
It does not cover long-term care insurance, life insurance, or disability
insurance, though some states have state laws that offer additional
protections against genetic discrimination.

10. Other Laws
The Health Insurance Portability and Accountability Act
One part of Title I of GINA required HHS to amend the Health
Insurance Portability and Accountability Act (HIPAA), which lays out
privacy requirements for health information.
The modification to HIPAA, made in 2013, states that genetic
information is considered to be health information; therefore, it
cannot be used by health insurers to make any decisions about health
insurance benefits, eligibility for benefits, or the calculation of
premiums under a health plan.

11. Genetic Discrimination:
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
https://www.nature.com/scitable/forums/genetics-generation/case-study-in-
genetic-discrimination-106704416/
https://ghr.nlm.nih.gov/primer/testing/discrimination
https://en.wikipedia.org/wiki/Genetic_discrimination
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
https://www.ashg.org/advocacy/gina/
What is genetic discrimination? – pgEd
https://medlineplus.gov/genetics/understanding/testing/discrimination/
Video Links
Genetic Discrimination and GINA: Will Genetic Testing Affect My Insurance? –
YouTube
Protecting you against genetic discrimination - YouTube