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'A User's Guide to Cheating Death: Genetic Revolution' -- the rise of personalized medicine?


‘A User’s Guide to Cheating Death: Genetic Revolution’ — the rise of personalized medicine?

Match your wine and music to your DNA, too! That doesn’t sound weird at all!

Timothy Caulfield likes his wine. And by that I mean his wine: the one wine he should be drinking, a vintage chosen just for him to match his particular taste preferences and compatibilities, through the precision of cutting-edge DNA technology. Truly, he is living in a golden age.

The fourth episode of Caulfield’s 2017 Canadian television series, A User’s Guide to Cheating Death, now streaming on Netflix, is devoted to what he calls a “Genetic Revolution” — the recent upsurge of direct-to-consumer DNA testing and its dubious applications. While some of these tests are amusing, or at worst minor frauds, others raise serious questions about how we understand and use our technology, and what dangers that may represent.

In addition to his DNA wine, Caulfield tries out “DNA face cream,” which seems to be indistinguishable from the ordinary goop people put on their faces to keep their skin smooth, complete with cucumber slices on the eyelids. Just to be sure, Caulfield trots out a scientific advisor, Roderick McInnes, MD, PhD, of McGill University, to render an expert opinion: “That’s complete nonsense!” he says. “That’s laughable.”

'A User's Guide to Cheating Death: Genetic Revolution' -- the rise of personalized medicine?

Timothy Caulfield uses a face cream specially compounded for him according to his DNA.

Caulfield listens to music composed of tone sequences that are somehow — the algorithm isn’t explained, and does it matter? — inspired by his own DNA. It sounds like New Agey, ambient noodling.

And he goes to some length about “celebrity meat,” made from cultured stem cells of celebrities such as James Franco, Jennifer Lawrence, and Kanye West, allowing you to actually eat their (lab-grown) flesh in the form of tasty-looking, herb-encrusted salami, before finally revealing the whole thing was a hoax intended as a PR stunt.

What all these strange products and scams have in common is the mystique of “DNA” to add a dimension to what would otherwise be a mainstream retail item. There are hundreds of face creams, and they all work the same way. Most people can figure out what wines they like just by tasting them, and what music they like just by listening to it. And, speaking personally, I like my salami with no added Kanye West.

It’s an interesting paradox that a culture renowned for (and in many ways hobbled by) its deep scientific illiteracy is so fascinated with the idea of building a scientific element into things that were perfectly fine without it.The average American probably couldn’t even give a coherent definition of DNA or explain what it does, but the general knowledge that DNA is somehow important, and genetic science is a major force in the modern world, elevates anything by adding “DNA” to the mix.

This “halo effect” is not a new phenomenon. In the early 20th century, there was a quack industry involving radiation, which the public knew vaguely was a mysterious process that had impressive powers, like making things glow in the dark. Radioactive health tonics, radon-infused water, even uranium comforters to snuggle yourself up in a warming whole-body dose of alpha particles, were widely marketed and used.

Electricity and ultraviolet light enjoyed similar fads. A vast range of electrical stimulators and “violet wands” (purple ultraviolet light tubes that produce a mild static electric charge on their surface, making the skin tingle) were produced and used in creative ways (the light tubes are now a popular sex toy).

'A User's Guide to Cheating Death: Genetic Revolution' -- the rise of personalized medicine?

A violet wand kit, providing mild electrical charges from glowing light tubes, for the appearance of scientific health.

DNA technology is just the newest science-y glamor that conveys truth and progress to the public, and profits to its mercenary purveyors. As Caulfield says, “Since Watson and Crick discovered the double helix structure of DNA in 1953, genetics has been touted as the missing link to health – the blueprint to life.”

In one amusing sequence, Caulfield recounts his family history of extreme athleticism, especially in track and field. Caulfield himself was a nationally-ranked high school sprinter, yet when he paid one of the leading genetic-testing companies, 23 and Me, to do an “athletic profile” of his DNA, their “scientific” conclusion about his genetic heritage was “unlikely sprinter.”

If an industry-dominant DNA-profiling company could not even identify potential as a sprinter in someone who was actually a sprinter, it seems we ought to put our emphasis on nurture simply because we are so incapable of understanding the implications of our genetic nature.

As bioethicist Art Caplan, PhD, of NYU, puts it: “[F]or at least two decades we’ve been listening to ‘just around the corner is the magic bullet; it’s gonna fix everything, we’ll understand your genes’; well, I think we’re a long way from understanding our genes.”

Though it’s clear that not all of this should be taken too seriously – if people really believe their DNA profile can identify the best wine for them to drink, how much energy do we want to invest in convincing them otherwise? Caulfield puts his finger on the deception that underlies it. “The problem is it’s sold as if the science is real,” he says. “So even if it’s fun, it leads to a misinformed public.”

The more worrisome side of the consumer genetic testing industry is not these silly fads and indulgences, but the fact that unregulated, unmonitored, for-profit DNA testing labs are intruding on professional healthcare and patient treatment, often with dubious scientific justification. “Genetic Revolution” scans a few consumer DNA-testing results reports, finding they’re a mixture of technical jargon and broad, boilerplate health information loaded with disclaimers.”Where do you draw the line, ethically, when it amounts to profiting off people’s fears?” Caplan asks.

A closer look at the genetic tests available to consumers reveals they offer little in the way of actual health benefits. Caulfield takes a genetic health profile that rates his risk of various genetics-linked conditions and recommends preventive strategies. To reduce the risk of cancer, exercise, keep weight down, eat grains and vegetables, and minimize alcohol use. To avoid heart disease, exercise, eat a “heart healthy diet,” and don’t smoke. And so on.

There are three problems here. First, DNA profiling gives an extremely specific, in fact unique, set of data for each patient, but the health recommendations that follow are absurdly vague and generic. They have to be, because there simply aren’t preventive treatments for diseases of lifestyle other than these broad-brush platitudes.

The second problem is that these simplistic recommendations are ones that everyone has already heard. You don’t have to take a high-tech, super-specific DNA profile test costing hundreds of dollars to know you should eat right and exercise.

And these recommendations, minimal as they are, are not actual treatments, but lifestyle changes, Their only help is to encourage the patient to do things they already knew they should be doing, but aren’t.

So the tests provide no practical information consumers don’t already have, and cannot be met with any treatment or response other than common-sense healthy living. But they’re being marketed as the advent of “personalized medicine” to a public desperate to get any edge — the more scientific the better — on their fears of aging, disease, and death.

This puts direct-to-consumer testing for serious health conditions on a far different footing from amusing gimmicks such as DNA face cream or DNA music. “[O]ur healthcare institutions, our pharmaceutical companies [claim], ‘You’re gonna get medicine designed just for you,'” Caplan says. “We have not delivered on that promise in any way, and won’t for some time to come.”

'A User's Guide to Cheating Death: Genetic Revolution' -- the rise of personalized medicine?

Results of a DNA health profile for Timothy Caulfield.

Jim Evans, MD, PhD, a clinical geneticist at the University of North Carolina School of Medicine, offers some perspective: “We’re not going to be able to cheat death, and we need to keep our expectations legitimate and not fall prey to our hope and our desires and our fears.”

Timothy Caulfield ends with a sharper assessment of the unhelpful industry that has arisen to do just that: “The revolution being sold to us through direct-to-consumer genetic testing is a lie.”

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