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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.
The results of a genetic test are normally included in a person's medical records.where? When a person applies for life, disability, or health insurance, in some countries the insurance company may ask to look at these records before making a decision about coverage. An employer may also have the right to look at an employee's medical records. As a result, genetic test results could affect a person's insurance coverage or employment. People making decisions about genetic testing should be aware that when test results are placed in their medical records, the results might not be kept private.
Fear of discrimination is a concern among people considering genetic testing, as they may be the most at risk for genetic discrimination. In some forms genetic discrimination is illegal in some countries (see the U.S. Genetic Information Nondiscrimination Act of May 21, 2008).2 Several countries have laws that help protect people against genetic discrimination; however, genetic testing is a fast-growing field and these laws don't cover every situation.
The term "genetic discrimination" was coined by the Council for Responsible Genetics (CRG).3 In 1993, the Ethical, Legal and Social Implications (ELSI) Working Group of the Human Genome Project issued a report titled "Genetic Information and Health Insurance". The report recommended that people be eligible for health insurance no matter what is known about their past, present or future health status. Two years later, the ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC) jointly developed guidelines to assist federal and state agencies in preventing genetic discrimination in health insurance.
Further, the ELSI Working Group and NAPBC recommended that health insurers be prohibited from using genetic information or an individual's request for genetic services to deny or limit health insurance coverage, establish differential rates or have access to an individual's genetic information without that individual's written authorization. Written authorization, the groups said, should be required for each separate disclosure and should specify the recipient of the disclosed information.
Next, the National Human Genome Research Institute (NHGRI) and the United States Department of Energy, acting through the ELSI Working Group, cosponsored a series of workshops in the mid-1990s on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshop participants were published in Science: (Genetic Information and the Workplace: Legislative Approaches and Policy Challenges [sciencemag.org]) magazine, the monthly journal of the American Association for the Advancement of Science.
In 1993, the National Academy of Sciences Institute of Medicine (IOM) Committee on Assessing Genetic Risks expressed concern that American workers were losing their jobs or their health insurance on the basis of information obtained through genetic testing.4 By 1996, the Council for Responsible Genetics had identified over 200 cases of genetic discrimination.4
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.5
Health insurers do not currently require applicants for coverage to undergo genetic testing. Employer-sponsored group coverage is underwritten on a group basis, rather than an individual basis. Thus, the future use of genetic information in medical underwriting is a significant potential issue only for the individual health insurance market. However, the cost of covering diagnostic genetic tests and genetic treatments is likely to be an issue for all forms of health insurance. When insurers encounter genetic information, it is subject to the same confidentiality protections as any other sensitive health information.6 Because of their long-term nature, genetic information is a potentially much more significant issue for individually purchased Disability insurance and Long term care insurance.7
Those recommendations, and earlier ones issued by the ELSI Working Group and NAPBC led, in part, to new legislation and policies at both the federal and state levels. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.
The next step in addressing the issue of genetic discrimination was taken by President Bill Clinton. The President had earlier supported proposed legislation that would have banned all health plans - group or individual - from denying coverage or raising premiums on the basis of genetic information. When the legislation failed to pass Congress, President Clinton issued an executive order ( Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information) in February 2000 prohibiting agencies of the federal government from obtaining genetic information about their employees or job applicants and from using genetic information in hiring and promotion decisions.
There continues to be a high degree of interest in these topics in state legislatures. More than one hundred bills were introduced in state legislatures in 2000 alone. Some would inaugurate protection from genetic discrimination while others would modify or clarify existing legislation.
Legislation in the United States called the Genetic Information Nondiscrimination Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions.8 It was signed into law by President George W. Bush on May 21, 2008.29 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.10
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.11 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.11
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:11
• 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.4 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.12 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”.11
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.
- "Council for Responsible Genetics", Accessed 2009-06-02
- 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.
- Amy Harmon, "Insurance Fears Lead Many to Shun DNA Tests," The New York Times, February 24, 2008
- "Genetic Information and Medical Expense Insurance," American Academy of Actuaries, June 2000
- "The Use Of Genetic Information In Disability Income And Long-Term Care Insurance," American Academy of Actuaries, Spring 2002
- 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.
- Department for Health and Human Services (2009). Genetics in the Workplace: Implications for Occupational Safety and Health. Washington, D.C.: DHHS.
- Miller, P.S. (1998). "Genetic discrimination in the workplace". Journal of Law, Medicine, and Ethics 26: 189–197.