(EMAILWIRE.COM, October 29, 2004) Tampa, FL – Facing Our Risk of Cancer Empowered (FORCE), a national advocacy group for women concerned about hereditary breast and ovarian cancer, has joined with the National Society of Genetic Counselors, the leading voice for the genetic counseling profession to develop a brochure on genetic discrimination. The brochure is timely, as Congress failed this year to enact federal laws to prohibit genetic discrimination despite wide support and a 95-0 passage of a bipartisan bill in the senate.
“There is a sense among the health care community and the general population that genetic tests present a high risk for discrimination, even though documented cases of discrimination are rare,” says Sue Friedman, executive director of FORCE. “This brochure presents an overview of what protections already exist on state and federal level, and where people can go for more information. At FORCE, fear of discrimination is the number one reason we hear for why people avoid genetic testing for a BRCA mutation.” Friedman, a survivor of hereditary breast cancer and carrier of BRCA 2 mutation, founded FORCE in 1999.
“Fear of genetic discrimination has been shown to impact whether at risk individuals obtain genetic counseling and/or genetic testing, which can ultimately impact the preventative health care that they obtain. We feel it is critical to ensure that individuals at risk for or affected by genetic conditions obtain factual information about genetic discrimination and the resources available to them, even if documented cases of discrimination appear to be rare,” says Kelly Ormond, President of NSGC.
The brochures will be available through both organizations and on-line at: www.facingourrisk.org/discrimination and www.nsgc.org/consumer/genetic_discrimination_resourse.asp.
Friedman states, “We hope this brochure clears up some misconceptions about genetic information and discrimination and assists people in making informed decisions about whether or not genetic testing is right for them.”
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FORCE was founded in 1999 by Sue Friedman, a breast cancer survivor and carrier of a BRCA-2 mutation that predisposed her to cancer. Diagnosed at the young age of 33, Friedman was unaware of her many risk factors for the disease, and noticing the lack of educational support for women in similar circumstance, she founded FORCE to provide support for high-risk women and raise awareness about hereditary cancer risks. For more information about FORCE, please visit: www.facingourrisk.org.
About the National Society of Genetic Counselors:
NSGC is a not-for-profit, professional membership organization, consisting of more than 2,000 genetic counselors. Genetic counselors work as members of a health care team, providing risk analysis, information and support to families and individuals who have members with birth defects, genetic disorders, or may be at risk for inherited conditions. For more information, visit www.nsgc.org
FORCE: Facing Our Risk of Cancer
16057 Tampa Palms Bloulevard W. PMB #373
Tampa, FL 33647
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