Posts Tagged ‘Genetic testing

20
Jan
11

the path to a new health paradigm takes one big step

Two or three years ago as the first direct-to-consumer DNA kits were being offered by companies like 23andMe and Navigenecs a big kerfuffle erupted when the California and New York departments of public health threatened to shut them down. The authorities claimed it was their duty to block the tests because the tests were offered online rather than through a licensed physician and because they were worried to death that the test results might be misinterpreted and cause unnecessary anxiety among recipients.

I was working with CA State Health Department people back at the time through my job in cancer public health. Nevertheless, I always suspected that the legal moves by the states were more to protect their statutory prerogatives and the medical profession than to protect the public. After all, I had been running into similar excuses to control cancer information among physicians for 30 years. Back in the ’70s some doctors would not tell their patients that they had been diagnosed with cancer for the ostensible reason that it would cause a lot of anxiety, and, besides, often there wasn’t much physicians could do about many cancers at the time. The situation improved after informed consent laws were passed forcing medical practitioners to explain diagnoses to patients before treating them. Also the organization I worked for would not give cancer patients professional-level pamphlets or journal reprints for fear of “confusing” patients and for fear of the docs who’d clobber us.

A lot of debate about the hypothesized impact of genetic information has been similar to the argument about the advisability of cancer information in years past. Fortunately some studies have been conducted to try to measure the emotional impact of genetic test information, especially genetic indicators for diseases like Alzheimer’s for which there is no treatment. The NY Times reported a couple of days ago about a study published recently in the News England Journal of Medicine that found essentially that news from the genetic tests didn’t cause a lot of anxiety in a study group of 2000. Many people didn’t take advantage of free genetic counseling offered or even discuss it with their doctors. Nor did the test affect behavior much in a positive way, such as changing lifestyle toward better eating habits. The surprising finding was how little impact the information had on people.

An author of one of the study stated:

“The medical field has been paternalistic about these tests,” says Peter J. Neumann, the lead author of the study, who is director of the Center for the Evaluation of Value and Risk in Health at Tufts Medical Center. “We’ve been saying that we shouldn’t give people this information because it might be wrong or we might worry them or we can’t do anything about it. But people tell us they want the information enough to pay for it.”

The author of the article, John Tierney, offers:

The traditional structure of American medicine gives control to doctors and to centralized regulators who make treatment decisions for everyone. These genetic tests represent a different philosophy, and point toward a possible future with people taking more charge of their own care and seeking treatments customized to their bodies. “What we have today is population medicine at the 30,000-foot level,” says Dr. Topol. “These tests are the beginning of a new way to individualize medicine. One of the most immediate benefits is being able to use the genetic knowledge to tweak the kind of drugs people take, like choosing among statins and beta blockers to minimize side effects.”

I agree with Tierney. This is a step toward a new way of medicine. As I write this the conflict over health care reform is on again. The health care model in the US is a mess and isn’t financially sustainable with about 8,000 baby boomers being added to Medicare each day. I think we need to shift a great deal of health responsibility to people, but it must be real, empowered responsibility with knowledge tools, decision making, and a support infrusturcture that’s available to all citizens. Conservatives use the term “responsibility” as a code word for blame. You know, “You’re  responsible (i.e., to blame) if you’re sick, not me. Don’t ask me for taxes to fix you up.”

If people are to take meaninful responsibility they need a system that provides them with meaninful information about their genetics, real time data about how they’re doing through, perhaps, mobile health monitoring, and a worldwide communication system that makes the latest scientific evidence about disease freely available in comprehensible, personalizable form. Putting up barriers to information like the results of DNA test through spurious fears of damaging effects is not the way to go about it. In the last century and a half we’ve created a huge, expensive scientific and medical system that restricts information and authority to an elite few gatekeepers. That’s got to change.

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