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An Exciting Gateway

Published: Thursday, May 23, 2013 11:05 a.m. CST

My doctor and dear friend Larry calls it “an exciting gateway of genetics, for it is leading to specific therapy to specific subsets of a given disease.” Some of the folks writing comments call it a conspiracy by drug companies and medical establishment motivated by greed.

Thanks to Angelina Jolie, millions of women (and men) are getting advice as to whether they should be screened for BRCA1 and BRCA2 genetic mutations. Lives will be saved: Reducing the risk of breast cancer from 87 percent to 5 percent, as Jolie did, is nothing short of miraculous. The fact that the sexiest woman in the world is standing up (with her husband) and showing us that she can be just as sexy — and also healthy — after a double mastectomy is almost as miraculous.

But not to everyone.

Sure, there are plenty of people on websites who have been praising Jolie for coming forward and focusing our attention on the possibilities of testing and treatment that could save lives — even if those comments are laden with fear and anxiety. Denial is a drug; Jolie stripped away that comfort.

Sure, there will be plenty of people who will want tests they might not need, at least statistically speaking.

As more and more diseases become susceptible to genetic screening, such questions will have to be faced. Who gets tested? Who pays? Should insurance be required to cover tests for everyone? At what cost?

The Supreme Court, coincidentally, is expected to decide within the next month or so whether the patent for the test is valid. I’d put my money on the patent being invalidated (meaning the cost of the test will plummet), especially in light of the huge burst of attention. And if it isn’t, Congress will step in and pass the Angelina Jolie Amendments to the patent laws. That’s politics.

On the merits, of course, some balance is needed: How do you give companies the financial incentive to do the necessary research to develop such tests while at the same time dealing with the cost issues when they succeed? So yes, hard questions abound.

But what is striking about the commentaries I’ve seen is not the anxiety of those worrying about whether they should be tested and how they will afford it, and it’s not the uncertainty about how lines should be drawn in terms of cost and access and insurance. It’s the outright hostility and suspicion.

Yes, hostility: Why did the media make such a big deal of one woman’s decision, when the death toll is mounting in Bangladesh?

Yes, suspicion: Maybe this is all a ploy by the medical establishment to force us to get tests and surgeries we don’t need.

As for the hostility, it seems to me entirely misplaced. Jolie would probably get more attention than Bangladesh if she and her husband had a public fight. Criticize that (or us, because what gets attention is what we want to hear about), not the coverage of her surgeries. When we look back in 10 years at the progress of genetic testing and disease prevention, I have no doubt this moment will stand out, as well it should. It deserves attention.

As for the suspicion, it signals a deeper and more serious problem. There is so much free-floating anger and rage toward the health care “system” — toward drug companies and doctors and hospitals and insurance companies — that people seem willing to turn what should be a cause for celebration into an opportunity to express that hostility.

My friend Larry is of course right. We are at an “exciting gateway.” But developing the trust and the policies that will allow us to move forward may prove as much of a challenge as the underlying science of genetics.

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