Genetic testing and consumer rights

By John Breyault, Vice President of Public Policy, Telecommunications and Fraud

It seems that not a day goes by without headlines announcing another scientific breakthrough related to the study of genetics. The science of genetics has undoubtedly played a key role in addressing many of the diseases that afflict millions of consumers. In addition, genetic testing may help consumers understand the diseases they may be predisposed to and take appropriate action.

A natural worry for consumers, however, is how this most personal of information could be misused, particularly by employers to deny them a job or health insurance companies to deny coverage or make coverage more expensive.

Fortunately, consumers have protections. First, the Health Insurance Portability and Accountability Act (HIPAA) makes it illegal for health insurance companies to exclude individuals from group coverage due to genetic predisposition to disease. The law also states that genetic predisposition to a disease does not constitute a preexisting condition without a current diagnosis.

Consumers can also rely on the Genetic Information Nondiscrimination Act, which prohibits health insurance companies from denying coverage to individuals or raising premiums because of genetic predisposition to disease. The law also prohibits employers from basing decisions on hiring, firing, job placement, or promotions on genetic information.

The Council for Responsible Genetics, one of the leading public interest groups focused on genetics and biotechnology, has developed a very informative Consumer Genetic Privacy Manual, which gives consumers an excellent overview of the issues surrounding genetics and consumers. In particular, consumers concerned about protecting their genetic information from prying eyes should refer to the “Tips for Protecting Your Genetic Privacy” section of the Manual.

Privacy is going to be one of the big issues facing consumer and public interest advocates in the coming year. Perhaps no more personal form of information is a person’s genetic information. It is for this reason that we will be monitoring this issue closely in the months to come.

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