The Pew Charitable Trust has awarded $750,000 to the Genetics and Public Policy Center for a new project focused on consumer protections for applications of genetic testing.
Genetic testing has grown dramatically in the past decade, and increasingly is becoming an integral part of health care. Currently, genetic tests for more than 1,000 different diseases are available clinically, and several hundred more are under development. These tests can help diagnose genetic conditions and guide treatment decisions, help predict risk of future disease, inform reproductive decision making, and assist medication choices or dosing.
The growing use of genetic testing raises a number of questions about how an individual’s genetic information can be used. In particular, can employers use genetic information to make hiring and firing decisions? Can insurance companies deny people coverage based on their genetic test results?
Despite widespread, longstanding agreement among American citizens and politicians that protection from genetic discrimination should be clear and consistent, an individual’s genetic information is protected only by a largely untested patchwork of state and federal regulations. Many states have enacted protections against genetic discrimination in health insurance, employment, or both. However, these state laws vary widely in scope and many are untested in court. State laws fail to provide a uniform floor of protections in employment and health insurance on which Americans can rely.
Meanwhile, individual patients who could benefit from genetic testing are in some cases foregoing it out of concern over possible repercussions. A 2004 study of 470 people with a family history of colorectal cancer showed that nearly half rated their level of concern about genetic discrimination as high.1 Those individuals with high levels of concern indicated that they would be significantly less likely to consider even meeting with a health care professional to discuss genetic testing, or to undergo testing. When people opt not to be tested, they lose the opportunity to seek monitoring and preventive care to forestall or avoid conditions for which they are at higher risk. This fear of genetic discrimination negatively affects not only patients, but also health insurers (who will pay more to treat conditions that are not caught early) and employers (when employees require more sick days and medical leave).
Moreover, the threat of discrimination hinders both genetic research and clinical practice. Linking gene variants to health outcomes often requires studies involving large numbers of people, but scientists report that many potential subjects are deterred by the fear that their information could be used against them by employers or insurers. Thus, research is impeded that would help to bring about the much-heralded era of personalized medicine.
In 2007 the Genetics and Public Policy Center surveyed 1,199 Americans over the age of 18 to measure public acceptance of the use of genetic testing for medical and non-medical purposes, to examine whom they do and do not trust with their genetic information, and gauge their support or lack thereof for laws that would protect them from some forms of genetic discrimination.
Details about the survey and participants demographics are included at the end of this report. Among the principal findings:
- The majority of Americans enthusiastically support genetic testing for research and
health care, but a large majority (92%) also express concern that results of a genetic test
that tells a patient whether he or she is at increased risk for a disease like cancer could be
used in ways that are harmful to the person.
- Majorities also said that they would trust doctors and genetic researchers to have access
to genetic test results. However, only one person in four would trust health insurers, and
16% would trust employers, to have access to his or her genetic test results.
- Nearly all Americans believe that health insurers and employers should not be able to
deny or limit insurance coverage or to make decisions about hiring and promotion based
on genetic test results about their risk of future disease. Three of every four Americans
support a law forbidding genetic discrimination by health insurers and employers.
- Support for laws prohibiting employment and health insurance genetic discrimination
was consistently strong among different groups of Americans – at least 68% of all
genders, racial/ethnic groups, ages, and levels of education and household income
supported laws against both types of discrimination. Support for both laws increased with
education and household income.
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