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Genetic DiscriminationTake our on-line survey and express your opinions. Background InformationThe Human Genome Project, a scientific endeavor that mapped and sequenced all of the genes in the human body, was essentially completed in the spring of 2003. These discoveries have resulted in improved understanding of the genetic basis of disease and created new opportunities for diagnosis, treatment, and disease prevention. Genetic disorders, once considered "rare" events in the field of medicine, are now recognized as widely occurring. More than 4,000 inherited disorders involving every organ system have been associated with genes. Coronary heart disease, diabetes, asthma and cancer have all been shown to have genetic or familial links. Genetic tests area available that aid in the diagnosis of many of these conditions. There are also genetic tests that can predict whether or not a person is at an increased risk for developing a disease later in life (e.g. breast cancer). Although these tests can be useful for health care providers, patients and their families in prescribing health practices that would screen for, provide early diagnosis, or even prevent illness, there is concern that genetic information may be used to determine eligibility for health insurance, disability insurance, life insurance, and employer practices. Genetic Discrimination: Different treatment of individuals based on genetic information (e.g., genetic test results or a family history of genetic illness) prior to the onset of illness. This does not include discrimination against individuals who are currently affected by a disorder. Privacy: An individual’s right to have information remain secret, (e.g. a patient has a right to keep personal health information from being disclosed to others or made public). Confidentiality: An organization or profession’s responsibility to protect private information, (e.g. a physician has a responsibility to keep a patient’s personal health information secret). What Protections Against Genetic Discrimination Currently Exist?Insurance DiscriminationFederal law: The Health Information Portability and Accountability Act (HIPAA) states that genetic information cannot be considered a pre-existing condition unless it related to a disease that has already been diagnosed. Therefore, patients who are covered by group health insurance plans cannot be excluded from group coverage based on genetic test results, and current subscribers cannot be refused coverage for a particular condition based on genetic test results. Currently, there are no federal laws that specifically address the issue of genetic discrimination in obtaining, or keeping, life or disability insurance. Washington State law: Health carriers may not reject health plan applicants and may not limit or exclude plan coverage for any reason associated with health risk or perceived health risk. However, coverage can be limited for several months for a condition that has already been diagnosed. Genetic information alone cannot be treated as a health condition. There are no state laws that address the issue of genetic discrimination in life or disability insurance. However, there is a state regulation that prohibits cancellation of a policy because of health conditions that emerge after issuance. Discrimination in Employment Practices (i.e, hiring and promoting)Federal legislation: The Americans with Disabilities Act (ADA) prohibits employers from discriminating against individuals who have disabilities. It is unclear whether ADA relates to genetic discrimination in employment and until a legal case is filed, people may interpret this law differently. The ADA does not necessarily protect individuals from having to disclose genetic status to an employer. State Legislation: Washington State Law Against Discrimination addresses issues related to discrimination for many issues including housing and employment. Whether or not someone would be protected under this law would depend on their status in a protected class (e.g., race, religion, ethnic background, etc.) If someone with a genetic risk to develop disease was perceived as, or treated as, a person with a disability then they would be protected. Genetic Discrimination ScenarioGenetic Screening for Alzheimer DiseaseScenario: Tom is 52 years old and his 80- year old mother recently passed away from complications related to Alzheimer disease. He’s heard that there is genetic research being done on Alzheimer disease and he’s interested in learning more about what testing is available. Tom is especially anxious because he feels that his older sister may be exhibiting signs of memory loss. She’s 60 years old. Tom visited a genetic counselor and was informed that a genetic test could determine whether he had a variation in a gene that would contribute to a higher risk of Alzheimer disease, with possibly an earlier onset, and increased risk for cardiovascular problems. The genetic counselor also stated that the results of this genetic test are not conclusive. If he tested positive he would not necessarily get Alzheimer disease, he’d simply know that he has a moderately greater risk for developing the disease than the general public. Likewise, if he tested negative, he could still develop Alzheimer disease later in life—a negative test would not decrease his risk to develop Alzheimer disease below the risk of the general public. In addition, the genetic counselor suggested to him, if he didn’t already have, or felt like he would ever want, life or long-term disability insurance, he should consider purchasing them prior to testing. She explained that people are protected from discrimination for purchasing health insurance by Federal and State laws, but there are no such protections for life or long-term disability insurance. She reassured Tom that there’s no evidence that insurers would discriminate based on his history or possible test results but she felt compelled to raise the issue. Tom, sensing the counselor’s unease about possible discrimination asked if he should have other concerns or take further precautions? The counselor explained that some people worry about having their genetic family history or genetic test results used against them in employment situations too. Maybe not getting a job or not getting promoted because of their health history. However, the Americans with Disabilities Act (ADA) prohibits employers from discriminating against persons with disabilities in hiring practices. It’s not clear how the ADA might protect an individual who has had genetic testing and who does not currently show signs or symptoms of illness – in other words doesn’t currently have a disability. She again reminded Tom that there is very little evidence that people with known genetic illness or disease genes in their families are actually discriminated against. She just wanted to be sure he had thought about the issues before he underwent testing. Please share your opinions with us and take our survey on Genetic Discrimination. |
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