President George W. Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008 in the Oval Office. May 21, 2008.
Every day little people are asked to explain why they are so short. The answers given are often more amusing than educational:
- I was born this way, what’s your excuse?
- My mother puts me in the dryer every night.
- Cigarettes stunted my growth.
- I didn’t eat all my vegetables.
- I was six-feet-two-inches when I went swimming and four feet when I came out of the water. [Note, the prankster had to retract this ‘short story’ told to a young boy before he was willing to take a bath.]
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On the more serious side, I often say, “God makes people in all shapes and sizes.” But I went way over the head of one young girl when I answered her with a question, “what color are your eyes?” After telling me they were blue, I asked “why aren’t they green? She shrugged. I anticipated this reply and said, “neither do I know why I didn’t grow.” Although this exchange did nothing to help her understanding, it did move me closer to incorporating genetics into my explanation of why I’m short.
Geneticists have identified almost 400 distinct types of dwarfism. And just as genetics determine eye color, two different genes determined that I would be a dwarf with Larsen’s syndrome—Filamin B and CHST3. Even so, knowing the specific genes for my dwarfism type doesn’t adequately explain why I got genes that resulted in my short stature. So let’s pivot to a more important question about the explosion of genetic information.
Is it legal to use genetic information against people whose genes identify a disability? November 21st—the 12th anniversary of the effective date of the Genetic Information Nondiscrimination Act (GINA)—makes this a timely question. The good news is that GINA was enacted to protect people from genetic information discrimination in (1) health coverage and employment as it relates to family history of a disease or disorder; (2) genetic tests of individuals, family members, or a fetus; or (3) any request for or receipt of genetic services, participation in genetic testing or genetic counseling by an individual or family member.
Title I of GINA prohibits health insurers from using genetic information to determine if someone is eligible for insurance or to make coverage, underwriting or premium-setting decisions. However, GINA does not cover insurance policies for long-term care, life, or disability.
Title II of GINA prevents nonmilitary employers with 15 or more employees from using genetic information in employment decisions like hiring, firing, promotions, pay, and job assignments. GINA also protects employees or applicants by prohibiting employers from (1) requiring or requesting genetic information and/or genetic tests as a condition of employment; (2) intentionally requesting or obtaining genetic information; (3) harassment based on genetic information; or (4) retaliation for action taken against activities made unlawful by GINA. However, provided confidentiality of genetic information is maintained, an employer is allowed to obtain genetic information based on narrowly-drawn inquiries for medical information in connection with a reasonable accommodation request, or for voluntary participation in an employee wellness program.
For more information on GINA, go to:
- Genetic Discrimination. National Human Genome Research Institute, National Institutes of Health. https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination.
- Fact Sheet: Genetic Information Nondiscrimination Act. Equal Employment Opportunity Commission. https://www.eeoc.gov/laws/guidance/fact-sheet-genetic-information-nondiscrimination-act.
- Genetic Information Non-Discrimination Act Charges (filed with EEOC) Fiscal Years 2010 – 2021. Equal Employment Opportunity Commission. https://www.eeoc.gov/data/genetic-information-non-discrimination-act-charges-charges-filed-eeoc-includes-concurrent.
This post is based in part on examples found in book I of my dwarfism memoir trilogy: Dwarfs Don’t Live in Doll Houses, https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/.