STATE REPRESENTATIVE
PAUL C. CASEY

Room 473-B
State House
Boston, MA 02133
Telephone: (617) 722-2230
District Office
585A Main St.
Winchester, MA 01890
Telephone: (617) 721-7285 or (617) 438-7185

A View from the Hill

FOR IMMEDIATE RELEASE: August 14, 2000
CONTACT: Michael Auerbach (617) 722-2240

PROTECTING YOUR GENETIC PRIVACY

It is a sad fact that every year thousands of people experience heart attacks or strokes. Many of these attacks could have been avoided had the individual exercised more, eaten better, avoided smoking or did more in general to protect his or her health. Interestingly, however, thousands of Americans are born with congenital heart conditions, leaving them at risk for a heart attack, but they live long, healthy lives without incident.

Insurance companies are constantly watching for those who are at greater risk for heart attack. After all, those who have a history of heart problems pose a financial risk for insurance companies: treating a heart attack, performing a pulmonary bypass, or hospitalization for a stroke costs money, a price borne by the insurance companies. It is understandable that those who have a history of heart problems might inspire caution to insurance providers. But should insurance companies be able to deny coverage to those with healthy lifestyles and no history of heart problems, simply because they may have genetically inherited heart conditions?

As genetic research continues to flourish and provide us with health care possibilities we thought unimaginable only a few years ago, questions arise about its uses. While there is an obvious benefit to the field of medicine, it has a potentially detrimental effect on our privacy. If information on our genetic history is released to insurance providers, we could see these companies using it to deny service to applicants.

What is problematic about using genetic history to determine who receives medical insurance and who does not is that many who have a gene that may cause cancer, heart disease, diabetes or another ailment may never see it during their lives. The National Institutes of Health reports that those with the gene that causes schizophrenia only have a 50 percent chance of actually developing the condition, since environmental conditions play a role in that mental disease. There are a number of reasons why such individuals may not develop these diseases. Studies show that exercise and diet can minimize the possibility of heart attack, if not prevent heart disease altogether. A glass of wine with dinner or a nightly dose of asprin are other ways doctors say people may avoid heart conditions. Monitoring one's diet can also prevent the onset of diabetes, a genetically inherited condition and a major killer in the United States. Physicians and nutritionists even suggest that certain foods, such as broccoli (sorry, George Bush) and orange juice, can prevent certain kinds of cancer.

Furthermore, while genetic analysis may reveal a certain "disease-prone" gene, researchers are still unclear as to how these diseases develop. While the gene may be there, the disease may never surface. Put simply, there is still so much to learn about the human genome and its relevance to immunology. Until researchers can conclusively link genetic evidence to the disease, it is premature to automatically exclude potential health care beneficiaries solely on the basis that they may or may not develop a condition that requires expensive treatment.

It is with this philosophy in mind that 35 states have passed so-called "genetic non-discrimination laws." For example, the New Hampshire is currently reviewing a bill that allows for genetic history to be shared only after the patient gives his or her for that information to be shared, and creates a panel analyzing the use of genetic information for insurance purposes. California is also reviewing several bills, which address genetic screening, the dissemination of genetic test results and the use of genetic information for health insurance.

It is with this philosophy in mind that I joined the unanimous General Court in passing H.5416, An Act Relative to Insurance and Genetic Testing and Privacy Protection. This bill incorporates the content of the bills currently under review in New Hampshire and California, and works to protect individual privacy by three actions. First, the bill would prohibit the disclosure of genetic tests without the expressed written consent of the person to whom the information pertains. Second, it would prohibit the requirement of the results of genetic tests as a condition of employment or insurance. Third, it would prohibit discrimination by insurance companies based on the use of genetic test results.

Protecting genetic privacy through such legislation is not designed to hinder genetic research. In fact, the bill onto which I signed states that it is our goal to achieve these three steps without limiting the potential for medical research, and permits for the use of such information for life insurance underwriting.

Rather, this bill works to limit the improper use of genetic information in order to deny employment or insurance. According to the American Management Association, 30 percent of employers ask for genetic information about employees, and seven percent admit to using genetic information for the purposes of hiring or promotions. Imagine yourself, a healthy individual, denied an opportunity to gain employment, not because somebody else is more qualified or has more experience in the field in question, but because your genetic history indicates that there is a possibility you may develop a life-threatening illness. Imagine yourself being denied insurance coverage because of this possibility and a person who does not have this genetic indicator, but whose behavior or environment is more conducive to a disease's development is given coverage.

Furthermore, by our sheer lack of complete understanding of genetics, making it corporate policy to deny individuals employment, internal promotion or insurance is counterproductive. It leads the employers or providers down a nebulous path. A gene that indicates schizophrenia, while it is one of the more predictable genetic "warning signs," is only 50 percent accurate. The National Institutes of Health find that while genetic research lies at the core of research on cancer, heart disease, and other physiological, neurological and psychiatric disorders, it is not the only factor to consider. Scientists are now attempting to marry genetics with environmental factors (such as where you live, what you eat or how much exercise you get) as they search for effective treatments and vaccines. In other words, genetic indicators are only part of the equation, and should not be used as the prime determinant of one's viability.

Medical research has entered a new and exciting phase with the successful mapping of the human genome and other important genetic discoveries. Hopefully, these discoveries can lead to cures to countless diseases. However, genetics does not provide all of the facts. It would be a total mistake and perverse to discriminate against anyone when we have so much more to understand.

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