As I talk to people about the future of medicine and the future of public health, vis a vis genetics, one big caveat that always comes up is that, in this grand future when we can tap into our genetic profiles, we must have some way to protect that information so that it’s not used against us - particularly in employment and insurance. Esther Dyson, for instance, speaking at Fortune’s iMeme conference last week, said that protecting our genetic privacy looms as among the biggest impediments to letting this genetic information flourish. If we’re afraid to let it out, for fear of it turning against us, we’ll never be able to act on or learn from the information (even if we have the means to see it for a mere $1,000).
The surprising thing here is that there is, in fact, a solution in the works: The Genetic Information Non-Discrimination Act, or GINA - pending federal legislation that would prohibit employment and insurance discrimination based on your genetic profile. Surprising, because this is, to my recollection, one of the rare occasions when Congress is getting ahead of a problem. Even though genomic sequencing for the common man is years off, and even though genetic testing now is by and large infrequent and often inconclusive, it’s clear that, assuming the scientists are right, we will eventually need some sort of protection in place. Indeed, the lack of privacy protections may actually slow the emergence of this genetic future, because companies are wary to venture into genetic testing unprotected. Pharmaceutical companies, for instance, have found it difficult to do clinical trials for genetics related drugs because of the perceived risks of genetic information floating out there.
So Congress has been, for once, ahead of the game. The Senate on two occasions passed versions of GINA. This year there’s been a ton of activity, as this play-by-play shows, culminating this April in a House vote of 420 to 3 to pass its own version of GINA. And since then….
…well, it’s been awfully silent. Legislation is notoriously slow, but in this case, since I have had a close interest, and since the past few weeks have been especially rich in portent - James Watson’s genome released, Craig Venter’s various escapades, and so on - I was starting to get concerned that GINA would stall out, yet again, and that it would be tabled until the fall (when, with an election season brewing, who knows if it would get any traction).
So I put in a call today to Sharon Terry, head of the Genetic Alliance, a genetics advocacy group based in DC that’s been very much involved in the creation of GINA. Long and short: She is extremely hopeful that GINA will be law in a matter of weeks - perhaps soon enough for the Genetic Alliance Gala on July 25. What’s afoot, Terry says, is that the Senate should pass a version very much like the House version later this week. Then the House, rather than pass their own version and force a conference committee to hash out the differences, would simply authorize the Senate version. Then it’s up to President Bush - who’s already on record supporting GINA - to sign it. Presto, GINA is law.
But that’s not the end of it. Having gotten GINA into law, Terry and the Alliance will then have the “reverse engineer everybody’s thinking,” as she puts it - meaning that having won the argument that there’s a problem in need of a legislative solution, she will now have to make clear that the problem has been solved, and that the science that may’ve been held back can now flourish.
Now me, I’ve never been convinced that genetic privacy will be in practice all that much of an issue; like a lot of privacy concerns, I think it’s often overblown. But as a policy matter, I absolutely think that GINA is necessary - the legal liabilities are just too great without some sort of protection, and to truly convince the masses that genetic medicine is an arena worth entering, they’ll need to be convinced that there’s no downside (the masses are necessary because with them comes data, and that’s way more important than just knowing what your genome is on it’s own).
And like many on the vanguard of genetic medicine, Terry is cognizant of the disconnect between the cutting edge science laying the groundwork of genetic medicine and the medical infrastructure that will need to deliver it. That there is still a huge chasm, and no law alone can close it.