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Genetic Discrimination in the Workplace: What You Need to Know
The Future Is Already Here
Genetic Discrimination at Work: Are You Protected?
In an era of easily available at-home genetic testing like 23andMe, we've gained convenience and mildly interesting data about ourselves, but this has come at the expense of privacy. Now that Pandora's genetic box has been opened, what job protections do you have if your employer obtains genetic information about you?
Now is the time to learn about the federal law that may (or may not) cover you. Learn why it was passed, as well as what the law includes and important exceptions.
Secret Genetic Testing of Employees: Why GINA Was Needed
Can you imagine how violated you would feel if your employer genetically tested you without your knowledge or consent? And what if the company then acted upon that information to deny you a job opportunity or to terminate your employment? Talk about Big Brother!
Situations like these have indeed occurred. They were egregious enough to have prompted a federal law dubbed "GINA" that protects American workers against such intrusions.
GINA Sure Ain't No Lady
How does GINA affect you and your workplace?
If you're thinking that you don't know this "Gina woman," read on. Chances are you're not familiar with the Genetic Information Nondiscrimination Act of 2008 (GINA).
Understanding GINA's Background
Although GINA has been widely criticized as a solution in search of a problem, perhaps the law was simply an idea ahead of its time, particularly given the big business of at-home genetic testing kits such as 23andme.
Genetic tests are available for thousands of diseases and conditions, ranging from Duchenne muscular dystrophy to hereditary breast and ovarian cancers.1 While some genetic tests are used to definitively diagnose a condition (such as Fragile X Syndrome), other tests assess the severity of a disease or determine a person's increased risk for a disorder.
Do you know GINA?
Why Would Employers Discriminate Based on Genetic Information?
To be clear, there was no evidence of rampant genetic discrimination in employment leading up to GINA's passage in 2008. However, the few cases that became public were alarming examples of employers' intrusion upon workers' basic privacy rights.
So why would employers discriminate against applicants or employees based on their genetic information? Often the answer involves stereotypes and misperceptions.
Imagined or not, employers may fear that the employee and/or his/her dependents will create excessive medical expenses and requests for leave. The company may also believe that the individual's genetic condition could create workplace injuries, excessive absences, lateness, and poor performance. (Yes, ultimately, it's about money.)
Whatever the particular motivation, genetic discrimination in employment now violates federal law. But it wasn't always that way.
This book blew me away. Read the fascinating and tragic tale of Henrietta Lacks, a poor black tobacco farmer whose cells were taken from her without her consent. Those cells became the basis of modern gene mapping, cloning, and life-saving vaccines and they made corporations billions. Yet her family remains impoverished. This is a cautionary story with modern implications for anyone seeking to hand over their genetic keys to 23andme and other companies.
23 and "We"?
Privacy Violations That Paved The Way for GINA: Tell Me They Didn't Actually Do That
From 1972 until the early 1980s, Dupont screened all African American job applicants for both the sickle cell trait and the disease itself.2 Sickle cell anemia is an inherited blood disorder that primarily affects people of African and Mediterranean descent. It is a serious condition that can cause infection, organ failure, and early death.3
The company defended its actions in Congressional hearings at the time. It said the testing program was voluntary, and its results were used simply for employees' "personal use" and their "education and edification." However, there was no formal company education program for the disease, and results were divulged to at least two federal agencies without employees' consent. Also, the company medical director accessed results himself on a "need to know" basis.
Norman-Bloodsaw v. Lawrence Berkeley Laboratory (1998)
This case was the first class action lawsuit to raise concerns about genetic privacy in the workplace.4
Job applicants at a research facility that did business with the U.S. Department of Energy had to provide blood and urine samples for standard pre-employment tests. However, genetic tests were covertly performed. Female job applicants were pregnancy tested and African American employees were tested for the sickle cell trait.
Applicants also received testing for syphilis, and both Latino and African American employees were singled out for repeated syphilis testing during their careers.
Burlington Northern Santa Fe Railway (2002)
One of the nation's largest railroads reached a settlement for $2.2 million after it tested employees for a genetic marker associated with Carpal Tunnel Syndrome without their consent. The company claimed that the testing was necessary for determining whether the employees' Workers Compensation injuries were work-related.
One of the tested employees inadvertently learned from the company nurse that the tests he had taken were genetic in nature, and he confronted the railway's chief medical officer. The worker was then investigated and threatened with termination.
To halt testing, the employee and his co-workers filed an injunction with the Equal Employment Opportunity Commission (EEOC). The case made national news, as the injunction occurred during the same week as the Human Genome Project made headlines with the announcement of a draft sequence to the human genome.
America knew we had entered a Brave New World.
American Management Association Survey (2004)
A 2004 study by the American Management Association revealed that one in six of the companies surveyed collected family medical history data from employees. (This is the same type of information that your personal doctor might ask you.)
Some companies also genetically tested for risks such as breast and colon cancer and for diseases such as Huntington's, as well as susceptibility to workplace hazards (e.g., known carcinogens used in their manufacturing processes). Up to half of the companies who collected such data acknowledged using the information to inform their decision-making regarding hiring, job assignments, and terminations.
Reader Opinion Poll
Which privacy scenario bothers you the most?
Genetic Testing: Is This Opening Pandora's Box?
GINA to the Rescue?
Impact On The Workplace
With GINA, employers are specifically prohibited from discriminating against job applicants, employees, or former employees because of their genetic information. Under the law—which became effective in November 2009—employers cannot legally request, require or purchase genetic information about applicants, their employees or their family members.5
GINA: The Genetic Information Nondiscrimination Act of 2008
GINA prohibits discrimination on the basis of genetic information in both employment and health insurance settings. It also imposes strong limits on genetic information disclosure.
A majority of states also have laws protecting genetic privacy, although their content varies. The passage of GINA in 2008 provided Federal "teeth" as well as consistency.
Modeled after Title VII of the Civil Rights Act of 1964 (which forbids discrimination on the basis of race, color, religion, sex, or national origin), GINA makes it unlawful to use an applicant or employee's genetic information to make employment decisions, including
- job training
- referral, and
- other aspects of employment.
Covered employers are also disallowed from requesting, requiring, or purchasing genetic information about an applicant, employee or his or her family member. Also prohibited are harassment on the basis of genetic information and retaliation.
Who Is Covered By GINA?
GINA applies to employers of 15 or more people, including
- private employers
- state and local governments
- educational institutions
- employment agencies and
- labor organizations.9
The table below provides examples of how this non-discrimination law defines "genetic information."
How Does GINA Define "Genetic Information"?
Genetic Information INCLUDES
Genetic Information EXCLUDES
an employee’s or job applicant's genetic tests
the genetic tests of their family members
Complete Blood Count (CBC)
disease or disorder symptoms of an employee or their family member
the employee's or family member's participation in clinical research that includes genetic services
liver function test
genetic information about the fetus or embryo of a pregnant employee (or her family member) or one who is seeking the services of reproductive technology
Drug and alcohol tests
information about an an individual's sex and age
What is NOT included in GINA?
GINA addresses discrimination in employment and health insurance. However, it does NOT protect against genetic discrimination in the following areas:
- life insurance
- disability insurance
- long-term care insurance
- mortgage lending6
- military and Veterans Administration services.7
Some of these are key omissions for health and disability-related conditions.
You Can't Help Who You Are ... Genetically At Least
"Family Member" According To GINA
GINA defines "family member" broadly, including the following:
- a dependent as a result of marriage, birth, adoption, or placement for adoption
- up to a fourth degree relative.
This includes a lot of people!
In case you were wondering ... that's the employee's parents, siblings, children, grandparents, grandchildren, uncles, aunts, nephews, nieces, half-siblings, great-grandparents, great grandchildren, great uncles/aunts, first cousins, great-great-grandparents, great-great-grandchildren, and the children of the employee's first cousins!
"If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people."— Thich Nhat Hanh (Vietnamese Zen Buddhist monk)
Exceptions To GINA
To every rule, there is an exception. GINA is no different.
While GINA generally prohibits an employer from acquiring genetic information, it does have several exceptions:10
- "Watercooler exception" - This is a big one, and it's one you can control. If a company has incidental knowledge of an employee's genetic information—for example, because a manager accidentally overhears an employee discussing his family member's illness—that is not a violation of GINA.
- A company may legitimately request family medical history in certifying an FMLA leave request when an employee requests leave to care for a seriously ill family member.
- If certain requirements are met, genetic information such as family medical history may be obtained as a part of voluntary workplace health and wellness programs. (Do you really want to participate in that wellness program?)
- A company may incidentally gain genetic information through commercially and publicly available documents like newspapers or websites. It is important that the employer does not intentionally seek genetic information out.
Sometimes a company is required by law to genetically monitor the biological effects of toxic substances in its workplace. Programs may also be voluntarily available.
- Employers who conduct DNA testing for law enforcement (e.g., forensic labs) are permitted to use DNA markers for quality control purposes to detect sample contamination.
These exceptions have been described as "narrow." Only time—and case law—will tell whether this is true. Additionally, time will also tell us whether GINA is indeed a solution looking for a problem or instead, a law ahead of its time.
How GINA Is Related To Other Types of Discrimination Claims
An employee who claims genetic discrimination might also claim one or more of the following, depending on the facts of their case:
Disability Discrimination: The Americans with Disabilities Act (ADA) protects employees who have a disability, a record of a disability, or are regarded as disabled.
Many inherited traits are disabling conditions. However, even a pre-symptomatic employee with a genetic disorder who is treated differently may have a claim under both the ADA and GINA.
Race or Sex Discrimination: By their very nature, genetically-related conditions are often linked with race or gender.
Examples of such conditions include:
- Duchenne and Becker muscular dystrophy which disproportionately affects males
- Sarcoidosis which afflicts African Americans and females at higher rates and
- Cystic Fibrosis which disproportionately impacts Caucasians.
Title VII of the Civil Rights Act prohibits employment discrimination on the basis of race, color, religion, sex, or national origin.
1 Severo, Richard. "Du Pont Defends Genetic Screening." The New York Times. Last modified October 18, 1981. http://www.nytimes.com/1981/10/18/us/du-pont-defends-genetic-screening.html.
2Sayre, Carolyn. "Sickle Cell Anemia - Symptoms, Diagnosis, Treatment of Sickle Cell Anemia." Health News - The New York Times. Accessed October 3, 2013. http://www.nytimes.com/health/guides/disease/sickle-cell-anemia/overview.html
3 French, Samantha. "Genetic Testing In The Workplace: The Employer's Coin Toss." Duke Law Scholarship Repository. Accessed October 3, 2013. http://scholarship.law.duke.edu/cgi/viewcontent.cgi?article=1056&context=dltr.
4Vasichek, Laurie A. "Genetic Discrimination In The Workplace: Lessons From The Past and Concerns For The Future." Saint Louis University Journal Of Health Law & Policy 3, no. 13 (2009): 13-40. Accessed March 8, 2017. http://law.slu.edu/sites/default/files/Journals/vasichek_article.pdf
5Nemeth, Patricia, and Terry W. Bonnette. "Genetic Discrimination in Employment." Labor and Employment Law (2009): 42-45. Accessed October 4, 2013. http://www.michbar.org/journal/pdf/pdf4article1461.pdf.
6Shanks, Pete. "DNA Donors Should Be Aware of Privacy Risks." Psychology Today. Last modified May 28, 2012. http://www.psychologytoday.com/blog/genetic-crossroads/201205/dna-donors-should-be-aware-privacy-risks.
7Vorhaus, Dan. "Surreptitious Genetic Testing: WikiLeaks Highlights Gap in Genetic Privacy Law." Genomics Law Report. Last modified December 9, 2010. http://www.genomicslawreport.com/index.php/2010/12/09/surreptitious-genetic-testing-wikileaks-highlights-gap-in-genetic-privacy-law/.
8U.S. Government Printing Office. "Federal Register, Volume 74 Issue 39 (Monday, March 2, 2009)." Accessed October 4, 2013. http://www.gpo.gov/fdsys/pkg/FR-2009-03-02/html/E9-4221.htm.
9 EEOC Home Page. "Federal Laws Prohibiting Job Discrimination: Questions And Answers." Accessed October 4, 2013. http://www.eeoc.gov/facts/qanda.html.
10EEOC Home Page. "Genetic Discrimination." Accessed October 4, 2013. http://www.eeoc.gov/laws/types/genetic.cfm.
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