New educational resources on law against genetic discrimination now available

[Guest guest]

New educational resources on law against genetic discrimination now available

(from Genetics and Public Policy Center)

With genetic testing becoming increasingly pervasive in medical care and our

daily lives, three of the most prominent organizations in genetics - the

Genetics and Public Policy Center at s Hopkins University, the National

Coalition for Health Professional Education in Genetics, and Genetic Alliance -

have teamed up to produce educational materials about the Genetic Information

Nondiscrimination Act (GINA), a landmark federal law that protects individuals

from the misuse of genetic information in health insurance and employment.

Enacted in 2008 after 13 years of debate in Congress, GINA limits health

insurers from using a person's genetic information to set eligibility

requirements, or establish premium or contribution amounts. The law also

prohibits employers from using genetic information in decisions about hiring,

firing, job assignments or promotions.

" Almost every day, our center is asked for more detailed information about what

GINA means, " said Joan , director of the Genetics and Public Policy Center.

" These targeted materials will go a long way towards answering the questions

that still exist, paving the way for successful, long-term implementation of

this important law. "

The user-friendly materials will help health-care providers and members of the

public understand their rights and responsibilities under the law and provide

essential information about its details. The documents are also clear about what

GINA doesn't cover.

The public-oriented materials - including an interactive website, " GINA & You "

information sheet, and slide set for advocacy organizations - are available, at

http://www.GINAHelp. org, in the Genetic Alliance Resource Repository, and on

Genetic Alliance's website, http://www.geneti calliance.org. The website also

includes a history of GINA's long struggle and passage.

" The public has waited a long time for these protections, and by providing this

information as a resource we are helping individuals become informed consumers

of genetic services, " said Sharon Terry, president and CEO of Genetic Alliance.

The materials for health-care providers include background documents, a

discussion guide suggesting how and when to talk about GINA with patients, a

teaching slide set, and case studies that describe how the law works in a

variety of real-world, clinical settings. These materials are available on the

website for the National Coalition for Health Professional Education in Genetics

(NCHPEG), at http://www.nchpeg.org.

" We've heard many questions already from health- care providers about the

specifics of GINA, " said ph McInerney, NCHPEG's executive director.

" Especially as genetic testing becomes more common and the value of family

history more apparent, there's a real need for these materials to reassure

providers and patients alike that GINA supports excellent clinical care. "

The Genetics and Public Policy Center (GPPC), part of the s Hopkins Berman

Institute of Bioethics, will have all of the materials on its website, at

http://www.dnapolicy.o rg. The GPPC's site also includes FAQs and other fact

sheets about GINA aimed at a general audience.

Development of the materials was supported by a grant from The Pew Charitable

Trusts.

Additional information:

Genetic Alliance: http://www.geneti calliance.org

Genetic Alliance is a national, nonprofit health dvocacy organization based in

Washington, DC committed to transforming health through genetics and promoting

an environment of openness centered on the health of individuals, families, and

communities. When GINA was signed into law, the Alliance chaired the Coalition

for Genetic Fairness, a multi-stakeholder coalition of over 500 organizations

committed to passing federal genetic nondiscrimination legislation.

National Coalition for Health Professional Education in Genetics:

http://www.nchpeg.org NCHPEG is a land-based nonprofit organization whose

mission is to promote genetics education for all health professionals. NCHPEG's

membership represents a broad range of professional societies, advocacy groups,

corporate entities, and government agencies dedicated to the integration of

genetically based health care into mainstream practice.

Genetics and Public Policy Center: http://www.dnapolicy.o rg

The Genetics and Public Policy Center in the Berman Institute of Bioethics at

s Hopkins University was created to help policymakers, the press, and the

public understand and respond to the challenges and opportunities of genetic

medicine and it potential to transform global public health.

Media contacts:

Genetic Alliance - Molly Brenner, mbrenner@...

NCHPEG - Joe McInerney, jdmcinerney@...

GPPC - nah Baruch, ginainfo@...

Contact Information

email: ginainfo@...

phone: (202) 663-5971

Web: http://www.DNApolicy.org