“For anyone concerned about the creeping medicalisation of life, the marketplace for genetic testing is surely one of the latest frontiers, where apparently harmless technology can help mutate healthy people into fearful patients, their personhood redefined by multiple genetic predispositions for disease and early death.
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Again a tool that’s proved useful in the laboratory has escaped like a virus into the marketplace, incubated by entrepreneurs, lazy reporters, and the power of our collective dreams of technological salvation, this time in the form of personalised medicine to treat us according to our individual genetic profiles.
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Evaluating genetic tests is a complex business, requiring assessment of how well the test measures what it claims to measure, how well the genetic variation predicts actual disease, how useful the results are in terms of treatment, and what the social and ethical issues might be. Clearly there’s potential for exaggerating the value of a genetic test, which is one reason Germany has imposed severe restrictions on direct-to-consumer testing. In the United States they’re talking of a new test registry on a government website, raising immediate concerns that it could lend legitimacy to unproved and potentially harmful products.Read more »
That’s the question Dartmouth’s Dr. Gil Welch asks in a column on the CNN website. He reflects on [recent] news about a test in development that might find a single cancer cell among a billion healthy ones — as so many news stories framed it. Welch analyzes:
“But it’s not that simple. The test could just as easily start a cancer epidemic.
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Most assume there are no downsides to looking for things to be wrong. But the truth is that early diagnosis is a double-edged sword. While it has the potential to help some, it always has a hidden side-effect: overdiagnosis, the detection of abnormalities that are not destined to ever bother people in their lifetime.
Becoming a patient unnecessarily has real human costs. There’s the anxiety of being told you are somehow not healthy. There’s the problem that getting a diagnosis may affect your ability to get health insurance. There are the headaches of renewing prescriptions, scheduling appointments and keeping them. Finally, there are the physical harms of treatments that cannot help (because there is nothing to fix): drug side-effects, surgical complications and even death. Not to mention it can bankrupt you.
Americans don’t need more diagnoses, they need the right diagnoses.
I don’t know whether this test will help some patients. It might, but it will take years to figure that out.Read more »
Comedian Stephen Colbert, who says he is “a huge supporter of the Susan G. Komen for the Cure foundation,” nonetheless took a sarcastic swing at the organization this week “for spending almost a million dollars a year in donor funds to sue…other groups” for using the phrase “for the Cure” in their promotions.
Then in December, the Huffington Post reported that “Komen has identified and filed legal trademark oppositions against more than a hundred of these Mom and Pop charities, including Kites for a Cure, Par for The Cure, Surfing for a Cure and Cupcakes for a Cure — and many of the organizations are too small and underfunded to hold their ground.”
Colbert said: “If they don’t own the phrase ‘for the Cure,’ then people might donate money thinking it’s going to an organization dedicated to curing cancer, when instead it’s wasted on organizations dedicated to curing cancer.”
The BMJ’s statement this week that the 1998 article by Andrew Wakefield and 12 others “linking MMR vaccine and autism was fraudulent” demonstrates what a difference one journalist can make. Journalist Brian Deer played a key role in uncovering and dismantling the Wakefield story.
CNN’s Anderson Cooper had a segment worth watching, including a new interview Cooper conducted with Wakefield via Skype:
Unfortunately, journalism played a key role in promoting Wakefield’s claims. The “Respectful Insolence” blog referred to one journalist as “CBS’ resident anti-vaccine propagandist.” Around the world there were many other examples of journalists’ unquestioning acceptance of the vaccine scares.
The BMJ reminds us that “the damage to public health continues, fuelled by unbalanced media reporting and an ineffective response from government, researchers, journals, and the medical profession.”
Healthcare journalists are buried under a mountain of public relations material sent to them every day of every week of every month. I don’t even work in a traditional news setting, yet I’ve made it onto the distribution lists of countless PR people.
The picture on the left shows a pile of video news releases sent to one TV health news reporter over a relatively short time span.
Here’s my year end look at just some of what was sent to me this year. Imagine what the New York Times, USA Today, the TV networks, and others receive.
I get countless emails from PR people offering interviews with their experts on:
• Seasonal Affective Disorder (SAD) — including an offer of an interview with a “celebrity trainer” who claims to have trained Julia Roberts, Cindy Crawford, Jennifer Aniston, Claudia Schiffer, and Kim Kardashian.(Were they all SAD?)
• A leading NY dermatologist invited me to “sip on champagne” and sample his new “daily nutrition for skin” cream.
• “For the more than 50 million Americans suffering from frequent heartburn, the thought of Halloween celebrations can truly be scary.” — PR for NYC gastroenterologist who is also consultant to makers of a heartburn drug. One of his tips: “Don’t just stock up on treats, prep your medicine cabinet” with the proton pump inhibitor of the company for whom he consults. Read more »
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