Privacy, Confidentiality and Patients' Rights
Currently, federal and state laws offer only a patchwork of protection against the misuse of genetic information. To fulfill the promise of the human genome project, basic genetic nondiscrimination legal protections need to be established in order to enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from the scientific advances in the field of genetics. Currently, the fear of genetic discrimination in employment and health insurance is a significant obstacle to full participation.
Strong, enforceable protections would prevent health insurers from denying coverage or adjusting premiums based on an individual's predisposition to a genetic condition, and would prohibit employers from discriminating on the basis of predictive genetic information. Additionally, such legislation would stop both employers and insurers from requiring applicants to submit to genetic tests, maintain strict use and disclosure requirements of genetic test information and impose penalties against employers and insurers who violate these provisions.
An overwhelming majority of Americans (85%) believe that if someone has a genetic test, their employer should not have the right to know the results.1
No one should lose a job because of the genes he inherited. No one should be denied health insurance because of his DNA. But genetic discrimination affects more than jobs and insurance. It also slows the pace of science. Today, many people refuse to participate in genetic research for fear of genetic discrimination. This means that without appropriate legal protections, clinical research protocols will lack participants, and those who do participate will represent a self-selected group. In a recent study on hereditary colon cancer, thirty-nine percent of participants identified the potential effect on their health insurance as the most important reason not to undergo testing.2 Such a high level of fear surrounding testing will be a limiting factor for research and treatment, especially with the exponentially increasing rate at which new technologies are being introduced.
The Personalized Medicine Coalition believes that strong legislation must be passed to provide the necessary reforms and protections to support the advancement, not exclusion, of genetic technology.
1 Survey Conducted in 2002 by the Genetics and Public Policy Center, Johns Hopkins University. Full results available on line at www.DNApolicy.org
2 Hadley DW, Jenkins J, Dimond E, et al: Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 163(5): 573--82, 2003 March 10.
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