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Western Carolinian Volume 68 Number 06

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  • BIG BROTHER BLOCKED By Aaron Zitner | Los Angeles Times Saying new protections were needed against the dark side of the genetic revolution, the Senate overwhelmingly approved legislation to prohibit companies from using genetic tests to make employment decisions, deny health coverage or raise insurance premiums. The vote was 95 to 0. The measure now goes to the House, where sponsors of a similar proposal claim support from 221 of the 435 members. The Bush administration issued a statement earlier this month backing the Senate measure. Doctors, scientists and patient groups long have said that anti-discrimination laws were needed to protect people from misuse of information gathered through some of the most important breakthroughs in genetics research. By studying the DNA in a patients cells, for example, doctors are able to diagnose certain diseases and determine a persons vulnerability to other ailments, among them Alzheimers disease, Huntingtons disease and some forms of breast and ovarian cancer. But people have been hesitant to have such tests done, doctors and patient groups say, even when the information can help them take steps to prevent illness. Patients fear that if gene tests show even a predisposition to a disease that may be costly to treat, employers and health insurers will penalize them. The Senate first began considering bills banning genetic discrimination in 1997, but none had ever passed. Its a big day here, said Dr. Francis Collins, director of the genome institute at the National Institutes of Health. For those of us who have been working on this for more than 10 years, this is huge. Collins said that fears of discrimination already had deterred potential participants of genetic research projects. In two studies of breast cancer and one of colon cancer, one-third of the individuals who were qualified to participate ultimately declined after hearing that there was no federal law against such discrimination, he said. Lawmakers made similar points on Tuesday. Its great medical news that weve moved this far . . . but one of the other sides of the coin is that this information could be used arbitrarily, unsuspectingly or even intentionally to harm your employment or ability to get health insurance, said Sen. Judd Gregg, R-N.H., chairman of the Health, Education, Labor and Pensions Committee. If Congress fails to act, we may well squander the vast potential of this research to improve the nations health, Sen. Edward M. Kennedy of Massachusetts, the senior Democrat on the health committee, said in a written statement. Discrimination based on genetic information is just as arbitrary, just as unacceptable and just as un-American as discrimination based on gender, race, religion or disability, said Sen. Tom Daschle, D-S.D., the Senate minority leader. Several lawmakers cited the case of Burlington Northern Santa Fe Railway Co., which was accused of conducting genetic tests, without workers permission, on some employees who filed claims for work-related injuries from carpal tunnel syndrome. The railroad was looking for signs that the injuries were genetic in origin, according to the Equal Employment Opportunity Commission, which settled a lawsuit with the company over the issue. But Collins said that while discrimination by employers was not a purely hypothetical thing, the legislation was needed mostly because of the potential for future misuse of genetic testing. Two insurance industry trade groups said the legislation could limit legitimate uses of genetic information that may be helpful to patients. Calling the bill well-intentioned but unwise, the Health Insurance Association of America said that current law already protects consumers from discrimination based on genetic testing. Insurance companies believe the new legislation will only add unnecessary and costly regulatory burdens, said Dr. Donald Young, association president. At the American Association of Health Plans, spokesman Mohit Ghose said the legislation might prevent insurers from finding ways to encourage patients to enter early-intervention and disease-management programs. The legislation would: Bar health insurers from denying coverage or raising premiums based on the result of a genetic test. Insurers could not request or require genetic tests prior to enrollment or at other times. Prohibit employers, employment agencies, training programs and others from using genetic tests in hiring, promotion, salary or other decisions related to employment. Set rules to guide employers in using genetic testing to monitor the health effects of working with toxic chemicals or other workplace hazards. As in race and sex discrimination cases, workers could file complaints about employer violations in federal court after first asking the Equal Employment Opportunity Commission to handle the issue. The method for pursuing complaints about insurance violations would vary by the type of health plan. Employer-sponsored plans could be sued in court, although they would not be subject to punitive damages. Complaints about other types of health plans are governed by an array of state laws and federal regulations. Rep. Louise Slaughter, D-N.Y., said violators would face tougher penalties under a bill she filed in the House, which has 221 co-sponsors, including 44 Republicans. 2003 LA TIMES Scientists Identify Gene That Is Key to Puberty By Rosie Mestel | Los Angeles Times However, endocrinologists dont understand what triggers the GnRH Scientists have discovered a gene that is crucial for the onset of puberty, a human developmental process that has long been swathed in mystery. The finding, published Thursday in the New England Journal of Medicine, should deepen scientists and doctors understanding of the chemical triggers that cause the body to mature sexually and should shed light on the reasons for puberty arriving abnormally early or late. One of the challenges a pediatrician faces is looking at a child who is delayed in puberty and trying to determine if this child is going to be OK and kick spontaneously into their own pubertal development or if he or she has a bigger problem, said Dr. Stephanie Seminara, a reproductive endocrinologist at Massachusetts General Hospital in Boston, a Harvard University professor and a lead author on the study. A better understanding of the genes and physiology underlying puberty may aid in diagnosis and perhaps provide ideas for novel therapies, she said. A team of French scientists independently reported on the genes role in puberty in a paper first published online in August in the Proceedings of the National Academy of Sciences.Puberty begins when the brains hypothalamus begins secreting a hormone gonadotropin-releasing hormone, or GnRH in an elaborate pattern of pulses. In response, the pituitary gland secretes additional hormones, which act on the ovaries and testes. They, in turn, induce the growth of breasts, body hair and other signs of sexual maturity. pulses that set the whole cascade in motion. To tackle the problem, the Boston researchers teamed with a Kuwaiti physician to study a Saudi Arabian family with a rare, genetic disorder known as idiopathic hypogonadotropic hypogonadism. Children affected by this condition never enter puberty unless doctors treat them with pulses of GnRH. Using DNA from family members, the scientists discovered that a gene causing the condition lay in a small region of chromosome Number 019. The team was then approached by scientists at a British biotechnology company, Paradigm Therapeutics and Cambridge University. They had created mice that lacked one of the chromosome 19 genes, known as GPR54, producing mice that never matured sexually. The researchers then analyzed the Saudi familys DNA and discovered that those affected by the disorder carried a damaged, malfunctioning version of GPRS54. However, the authors noted that this genetic defect is not the only cause of idiopathic hypogonadotropic hypogonadism. Many families with this condition carry normal GPR54 genes and therefore must have problems in other genes. Seminara said the goal now is to understand GPR54s function. The scientists know it is the blueprint for a protein receptor that is actively made in the hypothalamus during puberty. They suspect it plays a crucial role in releasing GnRH from the hypothalamus so it can begin-its pulsing job. 2003 tatimes =< $ bt 2 ERS ee | EL ae ptr ' HOD Ib CEG SUGGS) GALLE IV BA BA oaGA GI AT BHA 8 fo
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