California officials recently ordered two "personal genomics" firms to cease and desist operations within the state. The companies eventually were allowed to continue operations - with a few more regulatory conditions - but why did the state demand that they shut down in the first place?
The Silicon Valley startups, Navigenics and 23andMe, offer consumers a big-picture view of their DNA and the variations that make each individual unique. According to the Department of Public Health, however, it may be illegal for state residents to directly obtain valuable genetic information that could improve their health and enrich their lives.
Why would a state that regards itself as progressive and high-tech act to censor what we can know about ourselves? Though regulators may shut down unscrupulous firms, the services offered by Navigenics and 23andMe meet the highest standards of accuracy, validity and reliability. The laboratories employed by both companies are fully licensed and trusted by researchers around the world.
Therefore, the government took action to protect Californians from themselves.
These companies give individuals the ability to take a "snapshot" of their DNA. The state objected, determining that doctors are gatekeepers of the human body, and Californians need a prescription to access their genetic blueprint.
If residents must obtain permission to see their own bodies, however, why can they look in the mirror without approval from a licensed cosmetologist?
Unlike cosmetologists, doctors have a powerful lobby in Sacramento, and these technologies directly threaten their profits. Personal genomics aims to empower the individual, not line the pockets of an elite medical establishment. This establishment believes that individuals cannot be trusted with their own genetic information.
The genome is vast, complicated and poorly understood, the argument goes, and therefore customers could be inundated with raw information of little or no practical use. Forbidding us from looking at our genes because we don't yet understand them, however, is contrary to science, innovation and human nature.
Authorities once used this same argument to forbid Galileo to gaze at the stars, thus "protecting" him from the heretical conclusion that the Earth revolves around the sun.
If regulators regard personal genomics as akin to reading tea leaves, one notes that the state does not bar consultations with palm readers and psychics. Neither does it order all palm readers and psychics to cease and desist operations.
The government itself needs no doctor's note to collect DNA. California's forensic database is the third largest in the world, and in 2009 it will begin storing DNA from everyone accused of a crime, regardless of innocence or guilt. This double standard is both insulting and counterproductive.
Both Navigenics and 23andMe fully disclose the limitations of their products, and offer clear summaries of the latest scientific research.
Not only do these resources far surpass the expertise of most physicians, but new companies such as San Francisco-based DNA Direct already provide qualified counselors for customers who desire professional assistance.
Personal genomics can revolutionize science, health and society, but only if everyone is free to participate.
For example, it is currently impossible to know the hundreds or thousands of tiny genetic variations that help explain why someone loves roller coasters or horror movies. If 10,000 people join an online network for thrill seekers and start comparing their genetic profiles, the variations they share will be obvious.
In the same way, we can understand everything from complicated diseases such as Alzheimer's to the genes that make two people compatible. The promise of these technologies is boundless, and the value will only grow over time.
If allowed to thrive, personal genomics could become a $3.5 billion industry over the next four years. By ordering Navigenics and 23andMe to cease and desist, the Department of Public Health had threatened to quash a promising new field. Such an attitude would only force investors and entrepreneurs to relocate, and as a result California would lose revenue, jobs and prestige.
Our gene pool doesn't need a lifeguard. Instead of driving away talented innovators, state policy should keep them in California. That will make for better health, better research and a better quality of life for every Californian.
State off course on 'personal genomics'
Daniel R. Ballon
San Francisco Chronicle
2 November 2008
Daniel R. Ballon is a fellow in technology studies at the Pacific Research Institute in San Francisco. Contact us at firstname.lastname@example.org.
This article appeared on page G - 3 of the San Francisco Chronicle