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Executive Committee

Sharon F. Terry, Chair,
Genetic Alliance

Cynthia Pellegrini,
American Academy of Pediatrics

Derek Scholes,
American Heart Association

Joann Boughman,
American Society of Human Genetics

Timothy Leshan,
Brown University

Marla Gilson,

Barbara Harrison,
National Society of Genetic Counselors

Jeremy Gruber,
Council for Responsible Genetics

Friday, April 17, 2009

For More Information Contact:
Sharon Terry - sterry@geneticalliance.org or 202.966.5557 x201
Tiphané Turpin - tturpin@geneticalliance.org or 202-996-5557 x212
Coalition for Genetic Fairness Urges Public Comment on Proposed Regulations for Landmark Legislation
15 Days Left to Comment on the Employment Provisions of the Genetic Information Nondiscrimination Act

WASHINGTON - April 17, 2009 - With only 15 days left for public comment, the Coalition for Genetic Fairness urged Americans to remark on the U.S. Equal Employment Opportunity Commission (EEOC) Notice of Proposed Rule Making that will implement employment provisions in Title II of the Genetic Information Nondiscrimination Act (GINA). The employment provisions in GINA will impose confidentiality requirements and protections against employer use of genetic information in hiring, promotion and employee dismissal.

Signed into law in May 2008, GINA prohibits discrimination by health insurers and employers based on genetic information. Fully effective November 2009, GINA is the first and only federal legislation that will provide protections against discrimination based on an individual's genetic information in health insurance coverage and employment settings. The law will enable public use of genetic services in proactive and informed decisions about health.

"GINA will be enacted at a time when healthcare costs are rising and people are worried about obtaining or maintaining jobs," said Sharon Terry, chair of the Coalition, and president and chief executive officer of Genetic Alliance. "Title II of GINA will protect employees from unfair treatment based on their genetic predisposition to a health condition. We applaud the EEOC for recognizing the importance of this historic law, and look forward to the agency's leadership in protecting Americans from genetic information discrimination in employment."

Jeremy Gruber, a founder and executive committee member of the Coalition and president and executive director of Council for Responsible Genetics shared his perspective on GINA at the EEOC meeting that launched the public comment period on the proposed regulations. "Title II of GINA is a relatively common-sense law. My hope and expectation is that the regulations under Title II of GINA reflect the intent of Congress that employees enjoy strong protections under the law, not just to protect them from discrimination, but from access to and disclosure of their personal genetic information as well," said Gruber.

The EEOC opened the public comment period on the proposed GINA regulations on February 25, 2009. To submit online comments on the regulation, go to the Federal Rulemaking Portal at http://www.regulations.gov. The regulations and additional options for submitting commentary are available at http://edocket.access.gpo.gov/2009/pdf/E9-4221.pdf.

"The public must participate in the implementation of this groundbreaking legislation," said Marla Gilson, executive committee member of the Coalition and director of Hadassah's Washington Action Office. "All Americans should have a voice in this law; for we will all be affected by GINA. We look forward to a public less fearful of genetic discrimination and able to make more proactive and informed health decisions by the integration of genetic information into healthcare."

The Coalition for Genetic Fairness will continue to advocate for public commentary and raise awareness about the pending enactment of GINA. The Coalition wants to ensure that GINA regulations are clear, transparent, and accurately reflect the intent of the broad group of stakeholders that supported the legislation. On Wednesday April 22, 2009 the Coalition will partner with Genetic Alliance to host GINA Implementation: Title II, an interactive webinar. Visit http://www.geneticalliance.org to register for the webinar.


The Coalition for Genetic Fairness is an alliance of disease-specific, civil rights, and healthcare organizations, health professionals, industry leaders, and employers working to educate Congressional policymakers about the importance of legal protections for genetic information and ensure passage of meaningful genetic information nondiscrimination legislation. The Coalition continues to bring together the health community to educate all and raise awareness of GINA, its meaning, and how it will impact not only health insurance and employment, but healthcare delivery, research, and emerging technologies. The Coalition informs the regulatory process, addresses the needs of stakeholders, and creates and disseminates a variety of educational materials, resources, and tools.

The Coalition for Genetic Fairness is led by: Genetic Alliance, American Academy of Pediatrics, American Heart Association, American Society of Human Genetics, Brown University, Council for Responsible Genetics, Hadassah, National Society of Genetic Counselors, and PKD Foundation.

Please contact Andria Cornell at (202) 966-5557 x207 or acornell@geneticalliance.org with any questions about the Coalition for Genetic Fairness and its activities.


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