Responsible Genetic Testing

Dear Visitor

We are a group of citizens, healthcare providers, scientists, public policy makers, legislators, scientists, and health care consumers who are concerned about direct-to-consumer (DTC) advertising for genetic testing. As more genetic tests become available, it is critical that DTC advertising is subject to federal oversight (as is advertising for medications) to ensure that these ads are not misleading, inaccurate, using scare tactics, or encouraging patients to contact the very company that is profiting from each test sale. Please see the bullet points below with references for more information on DTC advertising.

You Can Help!

Stop this advertising until such oversight is in place!
Please:

Sign this on-line petition;
Pass it on to your friends and family;
Pass it on to colleagues in health care, science, public policy and public health;
Research which legislators in your state are interested in Consumer Protection and contact them by phone, e-mail, and fax to let them know that you want federal oversight of all DTC advertising for genetic testing before it comes to your area. (Click here to email this petition to others)

Sign our petition

Please read carefully and sign our petition

The Petition

We, the undersigned, support oversight of Direct-to-Consumer  advertising of Genetic Testing, and endorse a suspension of such advertising until it is regulated by an appropriate oversight body.  Our main concerns regarding this issue are as follows: 
 
Federal oversight of genetic tests and advertisements for genetic tests is limited.1,2,3
 
DTC advertisements for genetic tests usually overstate the benefits and utility of genetic testing (particularly for the general population) while failing to adequately address the risks, limitations, and uncertainties inherent in genetic testing.1,2,3 They also often utilize themes of fear, choice, hope, and control exploiting the public’s anxiety and lack of understanding of complex genetic information.1,2,3 
 
Some DTC advertisements for genetic tests also encourage consumers to contact the commercial laboratory directly; this downplays the role of health care providers, may lead to testing outside of specialized genetic counseling centers, and thus does not ensure appropriate informed consent, result interpretation, education, and support. 1,2
 
DTC advertising of genetic tests has been shown to increase demand for genetic testing, disproportionately among “low risk” individuals, many of whom are not appropriate candidates for testing.3,4,5,6 If DTC marketing of genetic tests becomes more widespread, increasing demands may lead to stricter criteria for and/or denial of coverage of genetic testing by insurance companies. This may lead to restricted and/or delayed access to genetic counseling and testing, even for high risk individuals.
 
References:
 
1. Gollust SE, Hull SC, and Wilfond BS. Limitations of direct-to-consumer advertising for clinical genetic testing. JAMA 2002; 288(14):1762-1767. 
 
2. Gray S and Olopade OI. Direct-to-Consumer Marketing of Genetic Tests for Cancer: Buyer Beware. JCO 2003; 21(17):3191-3193. 
 
3. Williams-Jones B. ‘Be ready against cancer, now’: direct-to-consumer advertising for genetic testing. New Genetics and Society 2006; 25(1):89-107. 
 
4. Centers for Disease Control. Genetic testing for breast and ovarian cancer susceptibility: Evaluating direct-to-consumer marketing--- Atlanta, Denver, Raleigh-Durham, and Seattle, 2003. Morbidity and Mortality Weekly Report 2004; 53(27):603-606. 
 
5. Myers MF et al. Genetic testing for susceptibility to breast and ovarian cancer: Evaluating the impact of a direct-to-consumer marketing campaign on physicians’ knowledge and practices. Genetics in Medicine 2006; 8(6): 361-370. 
 
6. Mouchawar J et al. Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: A naturally occurring experiment. Genetics in Medicine 2005; 7(3):191-197.

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