Access Institute | The Dark Side of Genetic Testing
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25 Mar The Dark Side of Genetic Testing

By Bart Magee, Ph.D.

March 25, 2019


The last couple of years have seen an exponential rise in the popularity and use of genetic testing. People are getting tested to research ancestry, identify genetic risks for health problems, even for dating. Not only are consumers accessing testing on their own, but it’s being added as a routine screen at clinics and doctor’s offices. On-line services are available to take one’s data and analyze it for potential health risks. And all of this is happening with little or no government oversight and even less psychological insight. And the risks are just beginning to be known. As it was back in the early, wild-west days of the internet, everyone is jumping on the bandwagon, excited by a new technology and the wealth of information it can provide while paying little heed to dangers that lie ahead. Lack of privacy around genetic information is a major concern, but I’m going to leave that dialogue to experts in other fields. I’d like to discuss the potential risks to individual health and well-being that are real, serious, and need more attention.

How Genetic Testing Can Harm Your Health

Most places that offer testing do provide a disclosure statement similar to the one published by the National Institute of Health: “Genetic testing can provide only limited information about an inherited condition. The test often can’t determine if a person will show symptoms of a disorder, how severe the symptoms will be, or whether the disorder will progress over time. Another major limitation is the lack of treatment strategies for many genetic disorders once they are diagnosed.” Disclosures often add that finding out that one may have the genetic predisposition to a disease can cause “stress and anxiety” in the individual. It all sounds pretty mild and manageable.

A recent study published in the journal Nature tells a more disturbing story. What the study found was that learning the results of a genetic test related to one’s health caused physiological and behavioral changes as well as changes in subjective experience that conform to the genetic factor. In other words, people receiving results that say they have the genetic disposition to become obese, over time their bodies will respond accordingly and will show changes in metabolism and behavior, whether or not they possess the actual genetic component. People were looking for the genetic key, but the belief it instilled was what mattered. In many aspects of health one’s beliefs have a far more profound impact than the genetic underpinnings. This may seem surprising, but it’s consistent with what we know about how the mind and body are connected. One way to see this is to look at the research on placebo and nocebo effects.

One of the big myths about the placebo effect is that placebos work by increasing positive thinking, making you feel better, that the effect is all in the mind. In fact, placebos have been shown to have measurable biological effects similar to drugs or even surgeries. Placebos work because the mind and the body aren’t really separate entities. Beliefs and expectations about the body initiate biological changes. And this happens whether the belief is conscious or unconscious.

Negative beliefs are just as powerful. The nocebo effect has been shown to have similar effects on physiology and health outcomes. For example, learning of a drug’s potential side effects will increase the likelihood of having that side effect. The nocebo effect is also how we understand the countless incidents of mass psychogenic illness that have been reported over hundreds of years. These episodes can effect hundreds of people at once and cause symptoms including: headache, skin rashes, vomiting, and paralysis.

Given the potential for negative health effects that go far beyond “stress and anxiety” it seems that genetic testing has more than a few ethical challenges. Is it ethical for a testing company to give an individual information from a genetic test that may influence their beliefs about their health, beliefs that have been shown to influence health outcomes? If the information in a genetic test is inconclusive should the person be given those results, when we know that the negative beliefs that occur could be damaging? What kinds of regulations are necessary to keep the public safe?

The Heredity Myth

We would also be wise to question the very purpose of getting the testing in the first place. The blind enthusiasm for testing is rooted in myths around heredity, the idea that who we are, our personalities, strengths, and vulnerabilities, is biologically inherited. Genetic testing rests on this myth and reinforces it, too (supported by fat advertising budgets). One of the main features of humans and one that differentiates us from other species is how little we inherit from our ancestors biologically and how much we absorb from culture, society, our parents and those around us. We seem to keep forgetting this as we search for the magic X factor in our genetics. Very few genetic elements actually have meaningful correlations to disease, for everything else the association between the genetic information is so weak, and ultimately dependent on the environment for expression, that it’s rendered meaningless — except that, as we just learned, getting the information itself can be toxic.

If how we think is more powerful than the genetic factors we keep looking for, we’d really be better off giving people assessments of their beliefs about health and illness. If we did that we’d not only be providing people with information about themselves that could be far more useful than facts about the contours of their genetics, but we’d able to identify and treat some of the potentially harmful beliefs that can lead to poor health outcomes. Here’s the best news, we already have a method to do just this — it’s called psychodynamic psychotherapy. Not an exciting new technology with VC funding, but one that’s tried and true and operates based on what we do know about humans, that our histories, desires, wishes, and beliefs, along with the people we are close to and our social environments not only tell us about who we are, but literally shape how our minds and bodies function. Maybe we should add a question that pops up when you click on the link for genetic testing: “Are you sure you’re not looking for therapy?”

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