Should We Fear Genetic Testing?

Though the prospect of learning about our DNA might seem wrapped in mystery and intrigue, genetic information is not so different from any other metrics we know about ourselves: Our age, our weight, our blood pressure. With a little scrutiny, any of these numbers can tell us something about our health and ourselves. It’s the same with a genetic scan – it gives us some perspective on our health, though far from the complete picture. It is, in other words, a place to start thinking about how we’re living our lives.

It’s important to remember, though, that genetics is a very new science, and that getting a scan today is the equivalent of buying the first generation iPod – it’s a work in progress, and will get much better as time goes on. There’s a lot that science doesn’t know yet about the exact influence of DNA on our health, and the journey is part of the ride. But it’s a rare opportunity, unprecedented, perhaps, in history, that the general public might be granted unfettered access to experience science as it happens. It’s not something that everyone will be comfortable with, but we shouldn’t underestimate how profound this opportunity is.

So when it comes to choosing a service, beware the hype – and use the same sort of common sense that we use as consumers apply when we choose a bank, a cell-phone provider, or a grocery store. Those companies that promise to give definitive insight into the future, the “if your kids have this gene they’ll be Olympic athletes” sort of promises, are overpromising and exaggerating what science actually knows. They may act as if our DNA was a crystal ball, but the fact is, it’s not: while our DNA has a large influence in our health, it is largely just that – an influence, along with all sorts of other factors like our diet, our environment, and other behavioral factors. Our health, in other words, is an equation where our DNA is just one factor, one input. The legitimate services understand this, and make this clear. Indeed, it’s a selling point for them: the fact that we can respond to our DNA, that we can actually use it to inform the way we live our lives, is part of the rare opportunity we’re being granted. Rather than fear this opportunity, we should consider it as straightforward as any risk we’re alerted to in life.

The fact that DNA is not destiny is, to me, a reason to consider getting a scan: understanding that we can act in response to our DNA, that we can change our lives to minimize the predispositions that our genes may create, should be a source of empowerment and reassurance. Our DNA is just the blueprint for our lives and our health. How much we choose to follow the plans or tweak along the way is up to us.

To me, the role of DNA in our health is no different for most people than any other blood test result or risk factor – it’s a best guess, a probability that we can choose to heed, or can choose to ignore. Medicine is always a numbers game – it’s usually just cloaked in the white-coat authority of a physician.

For those of us who want to get a head start on health, who want to live with a little more purpose and precision, then a DNA scan is a great place to start.

Thomas Goetz is the author of “The Decision Tree: Taking Control of Your Health in the New Age of Personalized Medicine”. The executive editor at Wired Magazine, you can follow him on Twitter and on his blog, The Decision Tree.

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16 replies »

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  2. I don’t see any reason to fear genetic testing as long as the patient/consumer doesn’t treat it as the final answer on his or her future. As Mr. Goetz says it’s a best guess we can choose to ignore if we wish.

  3. If you had genetic testing and did not disclose risk factors on insurance app would that constitute “fraud”? — Peter

    Probably. I believe there is a legal precedent set with disclosures in the financial market. You must disclose, for instance, past bankruptcies. Also, there are penalties when failing to disclose certain, personal, background information when applying for employment with most positions in a federal agency. Should you neglect to disclose arrests, convictions, etc… you can be convicted of fraudulence if the hiring agency chooses to press charges. I’m not for sure, but I believe it already a required data set to disclose if you are a smoker or use drugs.The idea being that the lender (in the case of financial markets) or hiring agency (in the case of federal employment) have a “right” to know this information because it can have a material impact upon their operations. You don’t want to lend money to someone with a poor track record of managing their finances. Nor would you want to hire a convicted thief as a security guard. There would be case-by-case exceptions, but it would require closer scrutiny of the applications.The genetic profile would definitely provide insight into a persons likeliness to develop disease in life. Though, I don’t believe there is a consensus on the “probability” of developing disease based upon your genetic scan.

  4. Legitimate genetic testing only has value in a non private insurance market, or where pre-existing has no effect on premiums/coverage. Insurance companies would love to have this tool to rate their risk pools. If you had genetic testing and did not disclose risk factors on insurance app would that constitute “fraud”?

  5. I am sure that in the future, genetic testing will be the norm instead of a rarity that it is now. Your argument of “acting upon our DNA” is, although optimistic, something that I do not think will be the case once DNA/genetic screenings to be more common.
    When you buy insurance or get hired by a company or do a myriad of other things, no longer will a background check only be a judgement of your past actions but a look into your potential actions by looking into your DNA.
    One has to realize that an insurance company does not have time to sit down with a panel and judge each applicant. Much like our automobile industry, everything is streamlined on an assembly line. But instead of soldering parts together, insurance (and some other industries) create an equation. And like you said, DNA will be another variable in that equation in the future. There is no human mind judging it, its only a number’s game.
    While we approach this time in our lives where DNA testing is more and more common and accurate, we as a society and maybe as a species, need to recognize the strengths and weaknesses of DNA testing. The road to hell is paved with good intentions so we need to both understand DNA and manage it in a way that allows us to make use of this information and protects us against the misuse of this information.
    Federal law(s) are probably the easiest solution but in the past if someone really wants to do something then they will do it. If there’s information they want to obtain, it will be obtained. DNA is collected through various means, not only through a syringe. Like in GATTACA, DNA can be collected through a handshake, a used napkin or even a stray eyelash.
    There’s many sides to this story. But the one truth is that we can’t fear this so much that we ban DNA screenings or demonize it. DNA screenings can be helpful or it can be detrimental. It is how we handle this information that is the issue.

  6. A rule of thumb is that nearly two-thirds of medical expenditures are related to conditions brought on by lifestyle and behavior. Genetic testing might be useful to lessen the effects of being dealt a genetic “bad hand” with lifestyle changes or close monitoring. Or genetic tests might provide an excuse to indulge in all manner of bad behaviors, knowing you are not at risk for the consequences.
    Of course, many people worry about misuse of genetic tests by insurers (or employers). One economic concept that people often fail to understand: if the individual has access to the results of a genetic test and the insurer does not, this could lead to adverse selection. People at risk for health problems would want comprehensive coverage (and long term care insurance) whereas those not at risk would feel less need for anything beyond a high-deductible plan. If taken to the most extreme, markets for risk could collapse as a result.

  7. I cut my professional teeth in a forensic-level environmental radioanalytical lab in Oak Ridge. My concern regarding commercial genetic testing goes to QC/QA concerns. Are there any uniform accreditation and regulatory standards? (e.g., akin to CLIA, NIDA, etc, weak as THEY are). The concern goes to “privacy” per se and to the larger context of erroneous (e.g., “false positives” for serious genetic predisposition condition “x”) data getting out.
    Forensic quality assay is expensive even with respect to conventional bioassay specimens. There’s a REASON drug testing for star pro athletes is done with forensic kid gloves care: no one is gonna risking blowing up some $10 million a year marquee sports dude with some jive mass production LabCorp pisslab EMIT screen.
    Anyone submitting street-corner commercial DNA lab analytics is a fool.

  8. Genetic testing is disconcerting on two levels.
    On a personal level, DNA is not like “any other blood test result or risk factor”. DNA, currently, is immutable. You can usually do something about other risk factors (exercise, stop smoking or drinking, move to the country, eat right), but there is absolutely nothing you can do other than live in fearful anticipation if your DNA shows that Alzheimer, or breast cancer, or whatever, is looming.
    Genetic testing without therapy to address the findings is a major departure from the historic human condition. Will we see more depression, more suicide attempts? Will there be more useless “preventive” conventional testing and therapy? Will all of us become patients for the duration of our entire lives, seeking doctor appointments and miracles?
    In my opinion, you should perform genetic testing if someone has symptoms, or if you have a cure to offer. In a world with limited resources for health care, random genetic testing would be the last thing I would want to see.
    On a more public level, because it will become public, genetic testing is the opening shot for all sorts of overt and covert discrimination. If, for example, your DNA says you are predisposed to schizophrenia (and findings will only get more accurate in time), and if medicine cannot fix that, you are a marked person.
    When a college accepts applicants, when a driver license is issued, when the army recruits, when an employee is hired, when insurance is sold, when marriage is contemplated, when the decision to have a baby is made, when a business partnership is formed, there is always risk taken. If genetic testing becomes the norm for mitigating such risk, nobody will care that you are religiously eating more fiber to mitigate your colon cancer risk.
    If this sounds far fetched,think about background checks routinely performed today and unheard of a few decades ago.
    There will always be those who want to peek into the crystal ball of their lives and genetic testing will allow them to do that. Whether they can handle it, is another question altogether, but as long as we cannot, and we cannot, guarantee that the results will be for your eyes only, genetic testing will be just another liability.

  9. I’m not afraid of anything, personally. But I do worry, at the community level, about the consequences of complex and sometimes erroneous information in the context of illiteracy and ignorance about science. We need better public education so that people can understand the limits and real implications of genetic and other findings that matter to their health.

  10. I think what is needed to assuage consumer fears with regards to medical data is this. A law should be passed that makes all health related data recorded by an agency identified as a facility or individual that provides healthcare services in both a treatment and diagnostic capacity; to be the sole property of the person for which that data was recorded. There should be some exceptions, such that if a person has provided advanced consent to release information to qualified facilities previously defined, then there would be no penalty. I would envision this to be something along the lines of emergency treatment. If a patient is unconscious and in dire need of assistance, then the emergency crew could obtain the necessary data without fear of legal repercussion.I think if there were a federal law (as much as I do not advocate for more federal laws) or even a state law that provided for patient’s ownership of their data, then people would have less to fear and be more willing to engage in these sorts of scans.

  11. Reminds me of Gattaca: genetics alone are not the sole source of achievement. But they can certainly help us understand part of what makes our bodies tick. I’m all for helpful genetic testing that may prevent disease, as long as we can all remember that DNA doesn’t work like a magic wand.

  12. There are so many issues surrounding genetic testing. Privacy for sure. Insurance coverage absolutely. But before I worry about the availability of genetic testing in my health care plan, I will remain more concerned with issues like basic preventative coverage, the ridiculous cost of pharmaceuticals, the poor insurance coverage of mental health in general, and the overall healthcare-industrial complex.
    After we settle all that, sure! I’d love a genetic test. In part because it took 30 years to determine my own genetic glitch that has almost killed me several time (note that I had to find it, not my doctors…). But as noted, we must remember that genetic testing is but one tool in the drawer. A panacea it is not!

  13. Of course we should fear genetic testing, especially with the rampant privacy violations part and parcel of unregulated HIT and EMRs. Insofar as the companies wish to sell the data, absolutely fear it and refuse.

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