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Do you have a duty to warn?
Your patient's husband persuades her to tell their sons, and they make a family appointment with you to make sense of it all. While discussing the illness, its genetic legacy and the course of the disease, it becomes clear that the sons are worried about their jobs. They feel testing for the HD gene would seriously compromise their job security.

You are worried too, for you are stunned to learn that all three sons work as air traffic controllers. The onset of Huntington's disease would severely compromise anyone's ability to work as an air traffic controller. From the perspective of an air traveler as much as a physician, you hope that the sons will undergo genetic testing and find other work if they begin to show any symptoms of HD. Still, you know that carrying a defective gene—even for Huntington's—does not mean a person has the disease, and you can see today that your patient's sons seem perfectly healthy. You offer to test and monitor the sons. They are reluctant to get tested, arguing that there is nothing you can do for them if they do have the defective gene, and that the risk of losing their jobs (and the insurance that goes with them) is too high. If you push the sons too hard, they may decide to underreport their symptoms, or to avoid medical help entirely.

You know your duty as a physician is to your patient, but because her genetic status is informative about other people—one of her parents must have had Huntington's and her sons now face a 50% risk of getting it—it makes you reconsider the question: who is the patient?

If you have a duty to warn your patient's children, what about her siblings, nieces and nephews? And what if a gene for one disease later turns out to cause other diseases, as is the case with a gene tied to certain kinds of heart disease and Alzheimer's disease? Would you need to go back and warn patients of their newly understood risks? Would you need to warn their relatives?
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Context

Are the sons' fears legitimate? Legal protection against genetic discrimination in insurance and in the workplace is a patchwork, and no federal legislation specifically relating to genetic discrimination in non-group insurance or the workplace exists. At the state level, 31 states have enacted laws outlawing genetic discrimination in the workplace, and 43 states have laws related to genetics and health insurance. None of these state laws is comprehensive and, as in the few federal laws that do apply (see HIPAA and cases below), there are substantial gaps:

  1. The laws prohibiting discrimination in employment on the basis of genetic information protect asymptomatic people and do not protect against discrimination against someone who has a genetic disease;
  2. The individual claiming discrimination has the burden of proving that he or she was adversely treated because of genetic information, which is hard to prove, but can be shown by direct evidence (e.g., statements or admissions by employer representatives) or more commonly through circumstantial evidence (e.g., the individual was fired immediately upon learning the results of the employee's genetic test); and
  3. Even if the individual is covered under the law and the employer made an adverse decision because of genetics, the employer still has a wide range of defenses, including claiming that the individual, with or without reasonable accommodation, is physically or mentally unable to perform the job, lacks other skills necessary to perform the job, is less qualified for the job than another candidate or is being fired for some other valid business reason such as poor performance or breach of company rules.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA), a comprehensive law designed to expand access to health insurance for Americans and the only federal law that directly addresses the issue of genetic discrimination, applies only to employer-based and commercially issued group health insurance. In addition, HIPAA National Standards to Protect Patients' Personal Medical Records, which were enacted December 2002, provides for comprehensive privacy protections, and while it is not specific to genetics, it is likely to have a huge impact—still unknown—on the collection, use and disclosure of genetic information. The new HIPAA privacy regulations apply to healthcare providers, health plans and health clearinghouses, but not, for instance, to employers or life-insurance companies.

In May 2003, one of several federal anti-genetic discrimination bills that had been proposed (this one originally by Olympia Snowe, R-ME) received bipartisan committee endorsement in the Senate. The committee compromise includes protection against genetic discrimination in the workplace as well as in insurance. The Bush White House has indicated support for the measure, though its prospects in the House are uncertain.

Case

Some existing federal legislation may apply to genetic issues, and two laws (the Americans with Disabilities Act of 1990 and Title VII of the Civil Rights Act of 1964) have been argued, with mixed success, in actual court cases.

Title VII: Between 1968 and 1992, the federally run Lawrence Berkeley Laboratory required medical testing and examinations as a pre-requisite for employment, and applicants accepted written offers of employment containing the general condition that they undergo a "medical examination." Blood and urine samples that were taken were tested for syphilis and some were also tested for sickle cell anemia (a genetic disease) and pregnancy. In 1995, workers sued, alleging that the tests violated their federal constitutional right to privacy, and their right to privacy under the California Constitution, the Americans with Disabilities Act (ADA) and Title VII of the Civil Rights Act of 1964. The U.S. Court of Appeals for the Ninth Circuit (the highest level of court below the U.S. Supreme Court) ultimately agreed in 1998, saying that an employee may not be tested for such highly private and sensitive medical information without his knowledge. The court ruled that the testing may have violated the U.S. Constitution's Fourth Amendment and the California Constitution's privacy protections, as well as Title VII of the Civil Rights Act because black and female—and not white male—employees were subjected to certain of the tests (for sickle cell anemia and pregnancy, respectively). However, the court dismissed the ADA claim, saying that the scope of pre-placement exams may be "unlimited" under the ADA.

ADA: In February 2001, the U.S. Equal Employment Opportunity Commission (EEOC) brought suit against the Burlington Northern Santa Fe (BNSF) Railway for doing secret genetic testing on its employees. The employees had filed claims for work-related injuries based on carpal tunnel syndrome, and the company wanted to determine if the injuries were in fact work related. The EEOC claimed that the test was illegal because it did not meet the Americans with Disabilities Act's requirement that tests be work-related and of business necessity, and further, that certain employees were illegally retaliated against for refusing to submit to the test. The case ultimately settled (in 2002), but it brought to center stage some of the ADA's limitations, both in proving discrimination and in protecting against the use of genetic tests in the workplace. (Note: There is no known gene responsible for carpal tunnel syndrome. BNSF Railway used an inappropriate test for their stated goal.)

Do you have a duty to warn?
Did you know?
Do the sons have a duty to test? Genetic professionals argue that there is one area—newborn screening—where it is incumbent, and in most cases mandatory, to administer and submit to genetic testing. Because catching certain genetic abnormalities early can allow for successful treatment, some form of newborn screening is required by every state. Each state has a menu of tests, including tests for genetic diseases such as phenylketonuria (in every state), hypothyroidism, galactosemia and sickle cell anemia. Up to 15 babies with defects are identified every day through newborn screening.