Stories of Genetic Privacy and Discrimination

Family history is a routine tool for medical diagnosis and genetic tests are rapidly becoming common as well. Genetic information, while potentially valuable for medical treatment, is increasingly used out of context in ways that are contrary to the interests of  consumers, employees, citizens and patients. Cases of genetic discrimination documented by researchers have identified misuse of genetic information and discrimination on the basis of predictive genetic information, a practice known as genetic discrimination.

The following cases begin to tell the story of the misuses of genetic information; discrimination and privacy invasion. They are but a few of the hundreds of cases that have been documented. As genetic tests become simpler to administer and their use expands, a growing number of individuals are being stigmatized on the basis of their genetic makeup. Employers, insurers and other entities are misusing genetic information to discriminate based on perceptions of long-term health risks and possible future disabilities.

Not only is this discrimination unjust, it is scientifically inaccurate. Genes can tell us only part of the story about why some people get sick and others do not. Even if we were able to know exactly what genes a person has, we still would be unable to predict their future health needs. This is because genetic information predicts—often with limited accuracy—that a disease may become manifest at an undetermined time in the future. Because the severity of many diseases—such as sickle cell anemia and spina bifida—varies widely among individuals, a genetic prediction cannot foretell how disabling the disease will be for a specific person or often even if they will ever develop a particular condition at all.

Health Insurance

Jacob

Jacob, a boy who carries a gene for a disorder called Long QT Syndrome (LQTS), was denied coverage under his father’s health insurance policy because of his “pre-existing condition.” LQTS is a rare and little-known genetic disorder that sometimes triggers sudden cardiac death. Those who carry the gene may be healthy until they suffer an attack without warning, but carriers can control their risk of cardiac arrest with preventive beta-blocker therapy. Jacob’s father wanted Jacob to be insured, but even after their state enacted a law prohibiting genetic discrimination, Jacob’s insurance company still refused to cover him. After fighting the insurance company for a year and a half, Jacob’s family finally won and got Jacob the health insurance he needed.

Heidi

Heidi was denied health insurance for her children, who were carriers of Alpha-1-Antitrypsin Deficiency, a genetic condition that destroys lung tissue and exposes those with the disease to emphysema and difficulty breathing. Even though medical professionals knew that Heidi’s children would never develop the disease themselves, the insurance company nonetheless denied them coverage because they carried the Alpha-1 genetic marker. Heidi appealed the decision a number of times, but her appeals were denied. Her insurance company only finally reversed its decision after a reporter contacted the insurer indicating that Heidi’s story was to be profiled in a national newspaper.

Anonymous

A 28-year-old woman who tested positive for BRCA-1, one of the genes that indicates a predisposition to breast cancer, was denied health insurance coverage because of her genetic status. Although she was not asked for genetic information when she applied for insurance, when the woman reported on her application that she had undergone prophylactic mastectomies and a hysterectomy, the insurance company requested her medical records, which included her genetic information. Her application for coverage was rejected and she was later able to determine that the denial was due to her positive BRCA-1 test result. Only after involving a lawyer, and after much time and effort, was she ultimately able to secure insurance coverage.

Danny

Seven-year-old Danny is in perfect health, but a genetic tests reveals that he has a gene predisposing him to a heart disorder. Even though he takes medication that lowers his risk of a heart attack, he is denied health insurance. His insurance company argues that since his gene has been present since birth, this qualifies as a pre-existing medical condition.

Lisa

Lisa’s young son has been having difficulty in school. Suspecting a learning disability, she consults her doctor. Her doctor performs some genetic tests, and tells her that Jonathan has Fragile X Syndrome, an inherited form of mental retardation. Her insurance company eliminates Jonathan’s health coverage, claiming that his disability represents a pre-existing condition. Lisa searches unsuccessfully for another company that will be willing to insure her son. She ultimately quits her job so that she can qualify for Medicaid.

Employment

Gary Avary

Gary Avary’s employer, Burlington Northern Santa Fe Railroad, tried to fire him after he refused to undergo mandatory genetic tests. Gary was diagnosed with Carpal Tunnel Syndrome (CTS) in 2000 and took leave from work to have surgery and recover. When he returned to work, Gary was told that he would have to undergo a mandatory medical examination. Gary was told that if he refused to submit to the examination he would be fired. He later learned that his employer was administering secret genetic tests to workers without their consent to identify a possible genetic predisposition to CTS as a defense to workers’ compensation claims. Gary refused to take the exam and his employer began disciplinary proceedings to fire him. After seeking help from his union and the Equal Employment Opportunity Commission (EEOC), who filed and settled a suit against Burlington Northern on Gary’s behalf, Gary was finally reinstated.

“What happened to me should not happen to anyone especially in the United States. It is a direct infringement on our fundamental right to be who we are. No one can help how they are put together, only God knows that – your employer, insurance companies or anyone else, has no business of that knowledge. That information…. should not be used against you and your family for hiring and firing practices, or acceptance and/or denial into insurance programs.”

– Gary Avary, Worker Burlington Northern Santa Fe Railroad

Kim

Kim was a social worker with a human services agency until she was fired because of her employer’s fears about her family history of Huntington’s disease. During a staff workshop on caring for people with chronic illnesses, Kim mentioned that she had been the primary caretaker for her mother, who died of Huntington’s disease. Because of her family history, Kim had a 50 percent chance of developing the disease herself. One week later, despite outstanding performance reviews, Kim was fired from her job.

Rhonda

Rhonda was offered employment and sent to a medical examiner for a pre-employment drug test and physical.  She was required to fill out a questionnaire and disclose the existence of numerous separately listed disorders in her family medical history. The questionnaire asked about the existence of heart disease, hypertension, cancer, tuberculosis, diabetes, arthritis and “mental disorders” in her family. She was then subjected to medical testing, from which the examiner concluded that further evaluation was needed to determine whether she suffered from carpal tunnel syndrome (CTS).  As a result, the offer of employment was rescinded.

Has your genetic privacy been violated?  Are you a victim of genetic discrimination?  Please send us your stories.