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This site has been designed for the public to learn more about genetic counseling, genetic counselors, and the families they serve.

New York State genetic counselors are a diverse group of trained professionals with advanced degrees in genetics and genetic counseling.

Special Report: DNA Masters, Article source: Nature
Nature 449 , 940-941 (17 October 2007) | doi :10.1038/nj7164-940a
DNA masters, Ricki Lewis

"New York Genetic Counselors speak about the profession and the future"

Breaking News!

NYS Genetic Counselors are ready for the Direct to Consumer Advertising Campaign promoting BRCA genetic testing.

Starting in September 2007 to March of 2008 Myriad Genetics Laboratory will launch a direct to consumer advertising campaign for one of their gene tests- BRCA.

This unprecedented approach to promoting gene testing for an inherited condition has raised concerns and offered an opportunity to prepare.

NYS Genetic Counselors have taken a leadership role in raising awareness and providing resources .

In the coming weeks NYS residents will view, hear and read advertisements suggesting that BRCA gene testing might benefit them. This very specialized genetic test is for a select group of patients with cancer family histories that often follow defined patterns. Genetic Counselors are trained to assist physicians and patients to recognize family history patterns, determine the likelihood that a family has an inherited predisposition to cancer, and in conjunction with family physicians suggest best management strategies. Genetic testing should not be randomly applied. Meeting with a genetics professional assures a family that the most experienced medical professionals have scrutinized their family medical history.

If you have questions about your family cancer history talk with your doctor or call a genetic counselor.

The Myriad Direct to Consumer Advertising Campaign for breast cancer testing first aired on September 10, 2007.

On September 11, 2007 two separate stories were published in the Wall Street Journal and the New York Times highlighting the critical debate over Direct to Consumer advertising campaigns for genetic testing and in particular, the Myriad Genetics Inc. Ad. Campaign for BRCA I and II gene testing.

View the New York Times
"A Genetic Test That Very Few Need, Marketed to the Masses"
or here
http://www.nytimes.com/2007/09/11/business/media/11genetics.html?ex=
1190174400&en=4f884bae3b457f08&ei=5070&emc=eta1

The NYS Department of Health and the Commissioner of Health for the State of NY have
launched an initiative to provide the most current expert recommendations on who is likely to benefit from this specialized cancer predisposition gene test for breast and ovarian cancer. All NYS practicing physicians will receive a letter from Dr. Richard Daines, Commissioner of Health, to offer them guidance as patients approach them for testing. In addition, the NYS Department of Health, in the next few weeks will launch a new web site that will offer NYS residents an opportunity to learn more, find a genetic counselor near them, and make available an 800# to assist consumers with questions.

“Direct-to-consumer (DTC) advertising of pharmaceuticals, while controversial, has occurred for many years and has been subject to significant debate and regulatory oversight. In contrast, DTC advertising of genetic testing began almost unnoticed and without regulatory oversight. DTC advertising for a variety of clinical genetic tests has appeared in print media, on television and radio, and on the Internet. The emergence of such advertising over the past 5 to 6 years signals an expanding market for genetic testing services.” “We developed a case report in which we identified some concerning aspects of the advertisement's content, including overstatements regarding the applicability and resulting benefits of BRCA1/2 testing, inaccurate information about health insurance discrimination, and failure to mention the role of health care professionals in decisions regarding genetic testing (Hull and Prasad, 2001).

“We soon identified additional genetic testing advertisements in print media, upon which we developed a framework for evaluating such advertising. We argued that genetic testing advertisements are premature at this time, given that their value to consumers is limited by the complexity of genetic information, the complicated social context surrounding genetic information, and a lack of consensus regarding the clinical utility of genetic testing in many cases (Gollust, Hull , and Wilfond, 2002). We also noted that shared FTC and FDA oversight of DTC advertisements for genetic testing — which was not occurring at that time — would help ensure the accuracy of their content.”

http://www.bioethics.nih.gov/research/directconsumer.shtml

 

Read other viewpoints relating to direct to consumer genetic testing.

In response to the recent Myriad Genetics Direct to Consumer Ad Campaign, the NYS Health Dept. has provided health professionals with BRACA I and II testing information, a list of references for further information, and has established a toll free number to locate genetic counselors throughout the state. To view this information, please click on the links below.

Genetic Testing for BRCA I and II: Information for Health Care Professionals

Learn more about genetic services in New York State and throughout the country by visiting: http://genes-r-us.uthscsa.edu/resources.htm

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Genetic Alliance Testifies in Congress about the Federal bill that would protect genetic information.

Testimony of
Sharon F. Terry
President and CEO, Genetic Alliance
Chair, Coalition for Genetic Fairness