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Testimony before the Public Health Committee, March 3, 2008

Good morning, Senator Handley, Representative Sayers, and members of the Public Health Committee.  My name is Ellen Matloff and I live at 34D Harbour Village in Branford.  I am the Director of Cancer Genetic Counseling at Yale Cancer Center/Yale School of Medicine and am here today to testify on Bill #459, “An Act Promoting the Early Detection, Diagnosis and Treatment of Lung Cancer, Breast Cancer and Cervical Cancer.”

I generally support this Bill, and am here to ask you to expand it to include legislation to protect consumers from being offered genetic testing without first being offered the option of genetic counseling by a trained professional to accurately order and interpret that test.  New York and Massachusetts already have legislation in place that touch on many of these issues.

This issue arose because a private company with a forced monopoly on genetic testing for
the breast and ovarian cancer genes, BRCA1 and BRCA2, has launched Direct-to-Consumer television and radio ads in Connecticut, New York and Massachusetts, which many of you have seen by now.  Unfortunately, these ads are not subject to the same federal oversight as are ads for prescription drugs. We believe that these slick advertisements overstate the benefits of genetic testing, while failing to adequately address the risks, limitations and uncertainties of the test.  We believe they prey on our society’s fear of cancer, particularly breast cancer, to persuade consumers that they need this $3200 test, even though few of them do.  Our Attorney General’s office is currently investigating whether these ads are misleading and deceptive. This company is aggressively targeting physician offices and encouraging them to order their own genetic testing, even though most physicians are not trained in genetics or genetic counseling.

We have data to show that the rate of genetic result misinterpretation is high.  Accurate interpretation is critical, because women who carry a BRCA mutation are offered options to reduce their cancer risks, including preventative removal of their breasts and ovaries. Result misinterpretation could lead to a woman having her breasts and ovaries removed unnecessarily.  It could also lead a woman to incorrectly believe that she is not at risk for cancer, just because her genetic testing is negative.  We have already seen patients who have had unnecessary prophylactic surgery because of inaccurate counseling.

We propose legislation that will make it mandatory for health care providers to obtain written consent from patients before ordering genetic testing indicating that they have been informed that genetic counseling by a trained professional is available and recommended before testing.

The field of genetics is arguably the area of medicine with the most potential for advancement.  However, if we allow corporate gain without regard to public safety to drive genetic testing, the potential for harm is staggering. 

Attached to my testimony is our proposed language for this legislation and supporting documents.  Thank you and I’d be happy to take any questions.

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