Personalized Medicine Coalition Supports President Bush's Call to Congress to Pass the Genetic Information Nondiscrimination Act
Washington, D.C. — January 17, 2007 — The Personalized Medicine Coalition (PMC) today issued the following statement in response to President Bush's call to Congress to pass the Genetic Information Nondiscrimination Act (GINA):
The Personalized Medicine Coalition fully supports the enactment of GINA. PMC believes that all genetic information, including family history, deserves strong and enforceable protections against misuse in health insurance and employment. Such safeguards will protect patients by ensuring confidentiality of genetic information.
Genetic information provides invaluable insight into an individual's makeup, helping guide treatment decisions, determine possible predisposition towards a disease, and generate data to inform the development of targeted drugs.
Fear of genetic discrimination by employers and insurers currently deters patients from taking full advantage of using genetic information to optimize their healthcare. Confidence in the privacy of genetic information is of utmost importance in order to facilitate patients' participation in clinical trials and encourage the use of genetic-based healthcare options. Patient privacy is a crucial component to the adoption of personalized medicine.
"Currently, federal and state laws offer only a patchwork of protection against the misuse of genetic information," said Edward Abrahams, Ph.D., Executive Director, Personalized Medicine Coalition. "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 the new therapies that will result from the scientific advances in the field of genetics."
In a survey conducted in 2002 by the Genetics and Public Policy Center, Johns Hopkins University, an overwhelming majority of Americans (85%) said they believed that if someone has had a genetic test, that their employer should not have the right to know the results. In a more recent poll conducted last year, Research!America found that 76% of Americans think Congress should protect genetic information.
GINA 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, GINA would prohibit 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.
Genetic discrimination is just one of the many barriers facing the full adoption of personalized medicine into healthcare practice. Economic concerns must be addressed; regulation and reimbursement policies must conform to the changes in the healthcare field; and medical education institutions need to incorporate personalized medicine into its curricula. All of these issues deserve serious consideration in order to realize the great promise that personalized medicine stands to bring to healthcare.
About the Personalized Medicine Coalition
The Personalized Medicine Coalition (PMC), representing a broad spectrum of academic, industrial, patient, provider, and payer communities, seeks to advance the understanding and adoption of personalized medicine concepts and products for the benefit of patients. For more information on the Personalized Medicine Coalition, please visit www.PersonalizedMedicineCoalition.org.
Feinstein Kean Healthcare