| It seems to me that the most immediate implication of inexpensive genome sequencing (23andMe et al) is the ability to tailor an individual’s medical care based on their genetic information. America’s legal system has miles of catching up to do before any genome-informed personalized medicine solutions can come to market. 2008’s Genetic Information Nondiscrimination Act was necessary to ensure that biomedical research continues to advance and so that patients are comfortable availing themselves to genetic diagnostic tests. There are really unresolved issues: (1) who should ultimately have access to the results of genetic testing? (2) when should a physician divulge information regarding patients’ liabilities for certain diseases? (3) who can decide that someone’s genome should be sequenced? Re: 1 In the 90s the Icelandic government contracted DeCODE Genetics as the monopolistic provider of genome testing in order to prevent fragmentation in genetic data libraries, so as to aggregate more genomes to better inform resource allocation for drug production. But in the wrong hands, the government could put this information towards policy measures that might vaguely resemble eugenics-based methods of control. There are pros and cons that have yet to be decided. Re: 2 Supposing that physicians have access to patients' genomes, the matter arises of if and when to divulge information regarding their liability for certain diseases. The default should be to give the patient the right to any amount of information. The actual amount of this information to be shared by the physician, however, should be determined on a case-by-case basis through a conversation between the physician and the patient in question. The true litmus test for this question is the net benefit to the patient. Supposing that a patient is at low risk for a disease and the treatment for this disease would be expensive and time-consuming, a physician would most likely be less inclined to divulge this liability, but there are still no standards of disclosure- we’ll see what happens. Re: 3 We’ve already banned insurers and employers from mandating genetic testing, so the closest analogue seems to be the relationship between a parent or guardian and a child. There is precedent that caretakers in a better position to make decisions for a minor or impaired individual should be given the ability to do so. Still, the issue remains of how parents will react to the results of testing. It’s likely that sequencing a baby's genome will eventually become a legal requirement for newborns much like a birth certificate, but until that point the question of who decides and pays for genome sequencing remains. All things considered, I say fuck it- the legal infrastructure will catch up with personalized medicine and the genetic testing companies and drug manufacturers already making use of the information will be in the best position to take advantage of it. Paddle early. |
1) Intellectual property in general is considered to be things that I, you know, thought of; my genetic code is the result of a physical process between my parents that I had absolutely no input into. If anyone owns it, they do. Of course, it was a derivative product of their genetic code, which they really had no claim to in the first place.
2) I leave complete copies of my DNA lying around everywhere I go, and on everything I touch. Maybe not in quantities that can be sequenced, yet, but it's there. Granted that I have ownership (and then some) over my own body, does that really continue to apply to the bits I discard in your foyer without noticing or caring?
I understand there are political issues that transcend this, but it feels like a case where politics is fighting a losing battle against physics.