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Essay
Direct-to-Consumer Genetic Tests and the Right to Know Genetic testing can be too much information, but that doesn’t mean it should be kept from consumers.
PODCAST
Susan Gilbert, Contributing Editor of the Hastings Center Report, speaks with Ronni Sandroff, editorial director of Health and Family at Consumer Reports.
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My daughter recently convinced me to have my first genetic test, after she tested positive for factor V Leiden thrombophilia, a risk factor for blood clotting disorder. My doctor agreed to write an order for the gene test, but she didn’t think it would matter much if I tested positive. “After all,” she said, “you’ve lived with it this long.”

Dealing with genetic knowledge is new for many of us, although families with devastating hereditary diseases such as cystic fibrosis and Tay-Sachs have dealt with it for decades. In recent years there’s been an avalanche of studies identifying the genes shared by people who have various disorders. Often, the genetic tests become available to the public long before this knowledge has been confirmed or proven useful for predictive purposes. For several years it’s been possible to order specific tests or analysis of your whole genome by sending a cheek tissue scraping or saliva sample to a lab. For a fee, some companies will also update the analysis of your genome as new knowledge is uncovered. The price of genetic testing has been falling, but recent efforts to bring it to a wider market have met with resistance.

PODCAST
Susan Gilbert, Contributing Editor of the Hastings Center Report, speaks with Ronni Sandroff, editorial director of Health and Family at Consumer Reports.
Download MP3 Version

My daughter recently convinced me to have my first genetic test, after she tested positive for factor V Leiden thrombophilia, a risk factor for blood clotting disorder. My doctor agreed to write an order for the gene test, but she didn’t think it would matter much if I tested positive. “After all,” she said, “you’ve lived with it this long.”

Dealing with genetic knowledge is new for many of us, although families with devastating hereditary diseases such as cystic fibrosis and Tay-Sachs have dealt with it for decades. In recent years there’s been an avalanche of studies identifying the genes shared by people who have various disorders. Often, the genetic tests become available to the public long before this knowledge has been confirmed or proven useful for predictive purposes. For several years it’s been possible to order specific tests or analysis of your whole genome by sending a cheek tissue scraping or saliva sample to a lab. For a fee, some companies will also update the analysis of your genome as new knowledge is uncovered. The price of genetic testing has been falling, but recent efforts to bring it to a wider market have met with resistance.

Ronni Sandroff, "Direct-to-Consumer Genetic Tests and the Right to Know," Hastings Center Report 40, no. 5 (2010): 24-25.