Your Genome, Your Data
from the other-digital-revolution dept
The computing revolution is not the only one driven by constant scaling of technologies: the field of genomics -- the study of DNA sequences -- has also enjoyed rapid falls in basic costs over the last decade and a half. This means that whereas the first human genome cost around $3 billion to sequence, we are fast approaching the point where it will cost first a few thousand, and then a few hundred dollars to sequence anyone's complete DNA. An interesting post on the Health Affairs Blog points out that neither the law nor society is ready for this.
Companies like 23andMe are already offering people the ability to find out about a range of important genes very simply, and for relatively low cost:
The concern is that someone might learn of that same risk [for breast cancer] for $499 by spitting in a tube and hitting the "breast cancer result" button at 23andMe, a company that will test saliva samples for diseases as well as for DNA ancestry. No one should take an action, such as prophylactic surgery without confirming results from 23andMe, which reports on only the three most common mutations.
Against that background of possibly life-changing or even life-threatening decisions being made on the basis of results obtained from a blob of saliva, the Food and Drug Administration (FDA) is now looking to regulate this market. But in the opinion of the article's authors, there's a danger here:
If regulators impose rules that allow us to obtain genomic data only as a medical service and through a health professional, however, access will never be cheap because it will always be bundled with expensive professional medical services. This is what Germany has done, and we should not follow their lead. By equating genome services to medical services, the German Government has reduced access, significantly limited the possible benefits to their citizens, and dramatically increased the costs.
The authors make a suggestive comparison:
It’s as if [governments] had decided to cut off access to the World Wide Web in response to fears of pornography and copyright infringement. Imagine what the world would be like today if we had passed the Draconian Internet regulation bills proposed a decade ago when the Internet was as young as the nascent genomics sector is now. We would have sucked the water out of the pond that gave birth to the marvels of Google, Wikipedia and Facebook.
There's another parallel, too. Just as with the Internet and its digital deluge, the imminent world of abundant, ultra-cheap genomic data could also could power the growth of a huge new economic sector:
Our curiosity -- and sometimes our health -- will require 'experts' to do the science and to explain its implications. Some of these "genomicists" will be health professionals no doubt: genetic counselors, nurses, social workers, or physicians who learn the intricate math and follow the exploding technical literature. Others will be experts in genealogy, history, ethnicity, engineering and anthropology. New businesses are emerging to create interpretive software and interactive websites that walk us through tours of our genomic data. If you’re young and computer savvy; if you study genetics and read anthropology and history, you may have a job in a field that is just coming to life. That is, if we don’t screw it up by strangling this nascent field in its cradle.
The trick will be to allow these new businesses to aggregate and analyze DNA information while preserving individual privacy and control over genomic data that is unequivocally yours. That's going to be hard, but the potential benefits in terms of improving people's health make it worth striving for. For more information, check out the original post which goes into greater detail.