Lets imagine that in ten years from now there is a genome sequencer in every medical doctor’s office. The price of whole-genome sequencing has plummeted to $500 with the development of new technology. Since $500 is in the range of other, often less effective diagnostic tests, it is the policy of your insurance company to shell out for this simple procedure. As part of your regular physical exam, your doctor not only listens to your heart & lungs, takes your blood pressure, maybe draws some blood, but also takes a swab from the inside of your cheek and sequences your genome from those cells. In an hour or so, all three billion nucleotides of your genome are automatically attached to your electronic medical record (EMR), which is standard fare for doctors in the future (not enough shelf space to do otherwise: your genome alone would fill approx. 200 volumes at 1000 pages each). In addition to your genome, your EMR contains your complete medical history: every cavity, every medication ever prescribed, every stitch.
A repository (i.e. a database) located somewhere, perhaps at the office of the company which developed the EMR application or the office of a company specializing in genetic data storage (or possibly as part of a nation-wide, centralized project), houses your EMR along with the EMRs of millions of other people.
The information contained in your EMR may contain information that
you would not want your boss or health insurance company to know, it is
conceivable that you may not want to know some of the information
yourself, especially since genetic sequence data can be predictive
(then again maybe an advanced diagnosis will allow for better disease
What kind of legal protections do you and your EMR have? Who can
legally look at this information and what actions can they legally take
from such knowledge? Can you get fired (or not hired)? Or dropped by
your insurance company (or not accepted to begin with)? Can a medical
researcher use the information in your EMR to aid in the discovery of
disease etiology (which may help you or others in the future)?
Maybe you live in Germany
and during a mandated medical exam to become a teacher, your doctor
identifies you as a candidate for a debilitating degenerative disease.
As a consequence of this information, your employer does not hire you
for future fear of having a less productive and more expensive employee
due to illness.
Or maybe you are an epidemiologist trying to unravel a complicated
disease that strikes a small population with criminal severity. Some
evidence suggests the disease is a genetic disorder. Other evidence
suggests the disease appears in some individuals after taking a widely
prescribed drug. Luckily, the indications of the disease are well
characterized. With the information contained in millions of EMRs, it
is hoped the cause of the disease can finally be discerned.
Or maybe you are a policymaker
today trying to determine what level of protection to afford persons
divulging medical information. What kind of recommendation does one
make? Personal medical records create possibilities of damaging
livelihoods if mishandled by either allowing access to those likely to
abuse it or not allowing access to those which desire to make good use