Greater genetic privacy needed
DNA technology has seen great advances in the past few decades. After the discovery of the double helix by Watson and Crick in the 1950s, the scientific community’s knowledge about genetics has increased exponentially. Today, a person’s entire genome can be sequenced with a small sample of hair or skin.
DNA sequencing provides valuable information to individuals about whether they are prone to specific diseases.
Scientists use it to conduct research to find if certain genes are directly linked to diseases, such as breast cancer. In addition, several businesses have cashed in on people’s curiosity about their genome by providing DNA sequencing services. Gene sequencing is expensive, but the prices are nothing compared to what they were a decade ago. According to the National Human Genome Research Institute, it costs around $10,000 to map a single genome compared to $100 million in 2001. As a result of decreasing prices, DNA sequencing is becoming a widespread phenomenon.
As with any discovery in the scientific field, after the practice begins, the moral and ethical risks of using the gene sequencing become apparent. The issue is that an individual’s privacy is at risk. Because it is possible to find out exactly which diseases someone is prone to by sequencing that person’s genome, groups with special interests, such as insurance companies, want this information to deny coverage to people who have a higher chance of having a disease that is expensive to treat.
Currently, the Genetic Information Nondiscrimination Act of 2008 prohibits insurance companies or employers from denying coverage to people because of their genetic information. However, it DOES NOT prevent insurance companies from denying people care because of preexisting conditions.
In addition, details about how genetic information is stored and who has access to these records are ambiguous. The Presidential Commission for the Study of Bioethical Issues investigates complex bioethical issues such as this one. By executive order, President Barack Obama established it and assigned well-known philosopher Amy Gutmann as the Commission Chair. According to a report released by the Commission, she is calling for more specific laws that require the consent of the person before his or her genome is used, no matter how it was obtained.
She explains, “In many states in the U.S., someone could legally pick up your discarded coffee cup and send a sample of your saliva out for sequencing to see if you show a predisposition for certain diseases. The exact same data – arguably your most personal data – are treated differently depending on who took your sample to sequence your genome. These are just a few discrepancies in public policy that can create confusion and uncertainty when it comes to understanding how to protect some of our most personal data.”
Gutmann’s warning is stern, and many are reacting to it strongly. However, it remains to be seen if politicians in Washington can pass laws that protect our genetic information. If they do not, the average American will be vulnerable to exploitation because of their DNA.