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ADVANCE Perspectives: Healthcare Information Professionals

Why Not

Published January 21, 2016 9:16 AM by ADVANCE Perspectives

By Tamer Abouras


One of the clearest differences between humans and animals is our capacity for intellectual inquiry. Your dog may be interested in what’s on your plate, but when you oblige and give him a piece, he’s not going to eat it, sit down and ponder where exactly it came from or whether or not it was locally and ethically sourced.


At the risk of stating the obvious, the human ability — and relentless desire — to continually ask “why?” is a catalyst for discovery, change and growth. And it’s also an existential request that’s never quite fulfilled. We never seem to run out of questions about our family ancestry, the history of planet Earth and certainly not about the universe, which seems largely unknowable due to its sheer size.


Still, while there’s much to be gleaned by looking outwardly, there’s a significant amount we can learn from taking a peek within. Enter DNA testing. Since Friedrich Miescher first discovered DNA in 1869 — with research that was later expounded upon in James Watson and Francis Crick’s proposal of the Double Helix in 1953 — scientists have studied these genetic code materials in order help us gain a greater understanding of ourselves, both in the form of our strengths and our weaknesses.

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Whether or not you consider it a bad thing, market capitalism has a tremendous ability to exploit this gnawing, constant need to have all the answers — often as soon as possible. Even for those whose primary purpose isn’t crudely separating our money from us, the effect is almost always the same: if someone advertises a product or service — these days usually an app — purporting to scratch that curious itch, people will pay up.


In the same haste with which we receive our “answers,” we tend to ignore potential flaws in their accuracy, all of which all leads us to a great piece ( that ran in Slate yesterday from freelance journalist Rob Arthur, a PhD in evolutionary genetics, on this very topic and a service known as “SNPedia.”


According to Arthur, “As its name suggests, SNPedia is a Wikipedia-style repository of knowledge but specializing in the health information associated with the sort of genetic variants 23andMe tests for. (The technical name for this kind of variant is ‘single nucleotide polymorphism,’ which provides the site its prefix.) SNPedia turned out to be the database for a product called Promethease, which offered to connect my genetic variants to each record in SNPedia’s voluminous database for the price of only $5.”


The entire article is pretty deep and absolutely worth a read, but the crux of SNPedia’s problem is outlined by Arthur in this paragraph.


“In theory, SNPedia is a democratization of science: Like other Wiki-style databases, anyone can contribute to any article, regardless of his or her qualifications. As co-founder Mike Cariaso wrote, ‘You are judged by the quality of your work, not the degrees you hold.’ In practice, Cariaso, co-founder Greg Lennon, and an army of Internet-crawling bots create and edit most of the articles, harvesting variants from the latest issues of scientific journals. Of the past 1,000 edits, only about 60 came from independent contributors’ accounts. Cariaso controls the quality of SNPedia articles rather strictly, and he was able to point me to several cases in which he modified or deleted pages when scientific articles were criticized or withdrawn.”


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He goes on to elaborate exactly what SNPedia’s deficiencies are, while still noting that, “For all of the confusion SNPedia generates, its efforts seem largely well-intentioned. … Other sites are more predatory, playing on the scientific sheen of genetic testing to recommend vitamins, supplements, and alternative medicine.”


One such site, according to Arthur: NutraHacker.


“For the price of $37, NutraHacker will produce a custom report that analyzes your genome and recommends (but does not sell) various vitamins, supplements, and foods. NutraHacker claims that its reports can help customers avoid harmful supplements, optimize their athletic training, and ‘detoxify.’”


“The trouble is that there’s little scientific backing for such a report. Most people in the developed world do not suffer from vitamin deficiencies, and when they do, it’s because of malnourishment or starvation, not their genes. While nutritionists hope that genetic information may in the future enable more precise vitamin prescriptions, the consensus is that the science isn’t advanced enough to guide recommendations yet.”


As stated earlier, the entire article is worth looking over — especially if you’re type jump at one of these services purporting to provide you with all sorts of previously unknown information about yourself.


With that being said, be cautious and do your homework beforehand. Curiosity already killed the cat; don’t let your credit be next.

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    ADVANCE Editorial Staff
    Occupation: Editor
    Setting: ADVANCE for Healthcare Information Professionals
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