-Caveat Lector- from: http://www.aci.net/kalliste/ Click Here: <A HREF="http://www.aci.net/kalliste/">The Home Page of J. Orlin Grabbe</A> ----- Gene Blues Fears of the Untermenchen Don't worry. The uber-lawyers will save you. A genetic test can tell you if you're likely to develop a deadly illness with no known treatment or cure. Whether patients would want to know they carry potentially fatal genetic instructions is an individual decision. But what insurance companies would do with, say, positive results from a genetic test for Huntington's disease, is a huge worry for many patients. Federal and state laws prohibit group insurers from discriminating against patients based on any test, including genetic tests, according to the Health Insurance Association of America. Nevertheless, a study published in the American Journal of Human Genetics found that the worry of genetic discrimination is very real. Out of 34 genetic counselors and patient advocate groups questioned, the great majority said they believe that discrimination by health insurers is widespread and common, according to the study headed by Mark Hall, a professor of law and public health at Wake Forest University. Hall also found that practically no one involved in the study could point to a specific incidence of genetic discrimination. Still, the study suggests there is a general suspicion that it happens and will happen more often as more tests are developed. Those fears send many people to clinics and hospitals under assumed names, said Lucille Towner, co-director of a Huntington's disease support group in Palo Alto, California. "There are a fair number of people who have used a fictitious name," said Towner, speaking specifically to the subject of Huntington's genetic tests. "The doctors understand and will not question further." Patients have an innate distrust of insurance companies despite research findings and legislation, patient groups say. With or without proof, patients believe insurance companies will use test results to save money on high-risk patients. "It happens, but more subtly," said Susan Pinheiro, a former genetics counselor and also a facilitator of the Palo Alto Huntington's group. Pinheiro said because of the insidious nature of discrimination, it's not surprising that cases are difficult to pinpoint. "Employers don't tell workers 'You're fired because we know you're going to get this terrible disease.' They look for other reasons to fire you." The National Institutes of Health reinforces that fear as not entirely unfounded. "Too many Americans fear that their genetic information will be used to discriminate against them and too often they are right," reads an NIH report on the topic. According to Jon Weil, director of the genetic counseling program at the school of public health at the University of California at Berkeley, giving false information can catch up with patients. "Having withheld or falsified information can be grounds for either not covering a given condition or not maintaining your insurance," Weil said. Weil recommends that patients undergo genetic counseling before, during and after genetic testing to explore the myriad implications the results may have. "People need information and potentially need psychological support in making the decision whether or not to get tested, or in handling the results of a test," he said. Laws to protect patients from genetic discrimination, at least when they get their coverage through their employers or the government, are in place in at least 28 states, and some experts believe they're working. "None of our members requests that applicants take genetics tests in order to get coverage (or set premiums), and none have plans to do so," said Richard Coorsh, a spokesperson for the Health Insurance Association of America. According to the HIAA, about 91 million Americans get their insurance through their employer. They, along with the 7 to 9 million who get health insurance through the government, are protected under these laws. "It is against the law to discriminate against anybody with health coverage on the basis of any test, including a genetic test," Coorsh said. The key phrase here is "with health coverage." If you don't have health coverage and test positive for any disease -- and then try to get an individual insurance plan -- it's likely that your premiums will be higher, Coorsh said. "People need to get insurance before they need health care," he said. The Health Insurance Portability and Accountability Act was passed in 1996. The law prohibits group health insurers from punishing patients for having a "pre-existing condition," which includes positive genetic tests when there are not yet any symptoms of the disease. The 5 to 6 million people in the United States who buy health insurance independent of an employer or the government also have to worry, because the laws in place, including HIPAA, often exclude them. Groups like the Center for Patient Advocacy also worry that since genetic testing is such a new field, it could escape the realm of existing laws if it's not mentioned specifically in legislation. "There are not that many laws protecting people even through their employer, although there are several pending," said Terre McFillen-Hall, executive director of the Center for Patient Advocacy. Issues like these are not limited to the United States. The government in Great Britain recently gave insurers the go-ahead to use genetic information to identify the hereditary risk of Huntington's disease. Representatives from the government and insurance firms say the move will help patients prove they're not predisposed to a genetic disease, but patient advocates worry it could also result in discrimination and open the floodgates for other tests. "This decision will mean that those with a negative test result will not be asked to pay more for life insurance because of their family history of Huntington's disease," said the health ministry's Genetics and Insurance Committee chairman John Durant. Those who test positive may face the opposite fate. People won't be forced to take genetic tests, but if they do, insurers can ask for the results to decide whether to give coverage or raise premiums. "We must have a public debate," the British Consumers Association said. "If more tests are approved, the terrible conclusion to this could be the creation of a genetic underclass." A similar scenario seems possible in the United States. "Although insurers do not now ask for genetic-testing information directly, it is possible, unless prohibited by law, to obtain this information from various sources," Hall's paper reads. "Insurers could learn about genetic testing from more generic questions about medical visits and diagnostic testing, or from examining medical records or claims for reimbursement," the paper continued. Dr. Philip Reilly, an officer of the American Society of Law, Medicine, and Ethics, and chairman and CEO of Interleukin Genetics, a company that sells genetic tests, said he believes Great Britain is taking a step in the right direction. "They have an open and enlightened view of doing things," Reilly said. Reilly expects that in the next five years, genetic testing will be routine in the United States for Fragile X syndrome in developmentally delayed child ren, cystic fibrosis, and breast cancer. The tests, he says, will be a part of good medical care, not patient discrimination. In order for genetic tests to be part of good medical care, patients need to feel it's safe to have them, and McFillen-Hall believes this will only happen if the federal government passes legislation to protect patients against discrimination. "There needs to be federal law and I cannot imagine that Congress would not act on that," she said. "This is what I would consider a no-brainer. You have to protect patients across the country." Wire News, October 24, 2000 ------------------------------------------------------------------------ ----- Aloha, He'Ping, Om, Shalom, Salaam. Em Hotep, Peace Be, All My Relations. Omnia Bona Bonis, Adieu, Adios, Aloha. Amen. Roads End <A HREF="http://www.ctrl.org/">www.ctrl.org</A> DECLARATION & DISCLAIMER ========== CTRL is a discussion & informational exchange list. Proselytizing propagandic screeds are unwelcomed. Substance—not soap-boxing—please! 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