In the United States health information privacy is protected by the Health Information Portability and Accountability (HIPAA) act. However, new gene sequencing technologies are now available making it feasible to read an individual’s DNA for as little as $1,000 USD. If there is predictive value in reading a person’s gene sequence, what are implications of this advancement? And will healthcare data privacy laws be enough to protect employees from discrimination?
The Financial Times reports a breakthrough in technology for gene sequencing, where a person’s chemical building blocks can be catalogued—according to one website—for scientific purposes such as exploration of human biology and other complex phenomena. And whereas DNA sequencing was formerly a costly endeavor, the price has dropped from $100 million to just under $1,000 per genome.
These advances are built on the back of Moore’s Law where computation power doubles every 12-18 months paired with plummeting data storage costs and very sophisticated software for data analysis. And from a predictive analytics perspective, there is quite a bit of power in discovering which medications might work best for a certain patient’s condition based on their genetic profile.
However, as Stan Lee’s Spiderman reminds us, with great power comes great responsibility.
The Financial Times article mentions; “Some fear scientific enthusiasm for mass coding of personal genomes could lead to an ethical minefield, raising problems such as access to DNA data by insurers.” After all, if indeed there is predictive value via analyzing a patient’s genome, it might be possible to either offer or deny that patient health insurance—or employment—based on potential risks of developing a debilitating disease.
In fact, it may become possible in the near future to assign a certain patient or group of patients something akin to a credit score based on their propensity to develop a particular disease.
And something like a predictive “score” for diseases isn’t too outlandish a thought, especially when futurists such as Aaron Saenz forecast; “One day soon we should have an understanding of our genomes such that getting everyone sequenced will make medical sense.”
Perhaps in the near future, getting everyone sequenced may make medical sense (for both patient and societal benefit) but there will likely need to be newer and more stringent laws—and associated penalties for misuse) to ensure such information is protected and not used for unethical purposes.
- With costs for DNA sequencing now around $1000 per patient, it’s conceivable universities, research firms and other companies will pursue genetic information and analysis. Are we opening Pandora’s Box in terms of harvesting this data?