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Genetic discrimination occurs when people are treated differently, for example by their employer or insurance company, because they have or are perceived to have a gene mutation that causes or increases the risk of an inherited disorder. It may also refer to any and all discrimination based on the genotype of a person rather than their individual merits.
United States Legal Status
Genetic discrimination is illegal in the U.S. after passage of the Genetic Information Nondiscrimination Act of May 21, 2008. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. It was signed into law by President George W. Bush on May 21, 2008. The law does not cover life insurance nor long-term care insurance, which has already created problems for some patients who have undergone genetic testing.
Health Insurance Discrimination
Much of the concern in the US about genetic discrimination focused on the US's private health care system, which before the passage of the Affordable Care Act, actively discriminated based on pre-existing conditions. With the combination of both laws, it is illegal to discriminate not only on pre-disposition to a certain medical condition, but also actually having that condition under active treatment. In 2008, the New York Times reported that some individuals avoid genetic testing out of fear it will impede their ability to purchase insurance or find a job. They also reported that evidence of actual discrimination was rare.
Genetic testing in the workplace
Some people have genes that make them more susceptible to developing a disease as a result of an occupational exposure. For example, workers with beryllium sensitivity and chronic beryllium disease are more likely to carry the gene HLA-DPB1 than workers without these conditions. By offering optional genetic testing to workers and allowing only the workers to see their own results, employers could protect genetically susceptible individuals from certain occupational diseases. A beryllium manufacturing company initiated a pilot program to test prospective workers for the HLA-DPB1 gene at a university-based laboratory. The company paid for the testing and counseling but received results that did not identify which workers had the gene.
In 1991, the American Medical Association Council on Ethical and Judicial Affairs suggested that the following five conditions must be satisfied in order for genetic screening by an employer to be appropriate:
• The disease must develop so rapidly that monitoring would be ineffective in preventing it.
• The genetic test is highly accurate.
• The genetic variation results in an unusually elevated susceptibility to occupational illness.
• Undue expense is needed to protect susceptible workers by lowering the level of the toxic substance in the workplace.
• The worker must provide informed consent prior to being tested.
Several occupational health screening measures similar to genetic testing are already taking place. For example, in 1978, DuPont reported testing African American applicants for sickle cell trait and restricted these workers from exposure to nitro and amino compounds. However, research indicates that workers or applicants would not take advantage of genetic testing due to fear of discrimination. A 1995 poll of the general public found that over 85% are concerned about access to use of genetic information by insurers and employers. Likewise, in the case of the beryllium manufacturer described above, so few workers participated in the genetic testing that the company decided instead to pursue an “enhanced preventive model of workplace controls”.
Genoism is a neologism coined by Andrew Niccol, director and writer of the 1997 film Gattaca, used to describe unethical and illegal genetic discrimination. Predictions of physical and mental performance are computed via genetics from DNA collected from hair, fingernails, skin flakes, spit swabs, eyelashes, etc. Upon birth, a number of genetically-induced characteristics are calculated: physical and intellectual capacity, life expectancy, probable successful diseases, and likely causes of death, all determined via blood samples and genetic testing. Job interviews, health insurance purchasing, and even potential dates can be sized up according to the perceived quality of the person's DNA due to advancements in genome sequencing. This put an ironic twist to Darwin's sexual selection for good genes. According to the movie, "We now have discrimination down to a science."
My father was right. It didn't matter how much I lied on my resume. My real resume was in my cells. Why should anybody invest all that money to train me when there were a thousand other applicants with a far cleaner profile? Of course, it's illegal to discriminate, 'genoism' it's called. But no one takes the law seriously. If you refuse to disclose, they can always take a sample from a door handle or a handshake, even the saliva on your application form. If in doubt, a legal drug test can just as easily become an illegal peek at your future in the company.
- Gattaca, the most notable film about genetic discrimination
- Human Genome Project
- Health Insurance Portability and Accountability Act
- Genetic Information Nondiscrimination Act
- Annas, George (2003). "Genism, Racism, and the Prospect of Genetic Genocide". Retrieved 2008-07-31.
- Keim, Brandon (May 21, 2008). "Genetic Discrimination by Insurers, Employers Becomes a Crime". Wired.com. Retrieved May 28, 2008.
- Statement of Administration policy, Executive Office of the President, Office of Management and Budget, 27 April 2007
- "Administration News | President Bush Signs Genetic Nondiscrimination Legislation Into Law," Kaiser Daily Health Policy Report, Kaiser Family Foundation, May 22, 2008
- Rob Stein (2012-09-16). "Scientists See Upside And Downside Of Sequencing Their Own Genes". NPR.
- Amy Harmon, "Insurance Fears Lead Many to Shun DNA Tests," The New York Times, February 24, 2008
- Department for Health and Human Services (2009). Genetics in the Workplace: Implications for Occupational Safety and Health. Washington, D.C.: DHHS.
- Brant-Rauf, P.W.; Brant-Rauf, S.I. (2004). "Genetic testing in the workplace: Ethical, legal, and social implications". Annual Review of Public Health 25: 139–153. doi:10.1146/annurev.publhealth.25.101802.123012. PMID 15015916.
- Miller, P.S. (1998). "Genetic discrimination in the workplace". Journal of Law, Medicine, and Ethics 26 (3): 189–197. doi:10.1111/j.1748-720x.1998.tb01419.x.
- BBC News "US Blocks Genetic Discrimination". 25 April 2008. Retrieved 2010-01-04.
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