There are companies that use DNA to advise us on the most important decisions in life: this is the new genetic charlatans
"Then I will give you all the details, but I anticipate that this is all the new hair growth." This is how Lluis Montoliu, one of the country's leading experts in genetics, starts when I ask him about the services that claim to analyze DNA to give us advice on the most important decisions in our lives.
In early 2017, the FDA decided to clear what had been a de facto ban: sending genetic tests directly to the end consumer. And what happened next won't surprise anyone. During the past three years, a zillion of companies have launched to offer products and services that, if true, could revolutionize our day to day. But are they?
What if all the answers were in the DNA?
That is what many companies of all kinds believe. SpareRoom offered the possibility of finding a roommate thanks to DNA. Strain Genie seeks to tell consumers what the effects of cannabis will be on their health. Nutria promises to make you a diet nutritionally adapted to your genome and Orig3n offers a whole family of packages ranging from tips to make our children snowboard stars to a guide to find out what they are good at.
Offering personalized scarves with our Genetic Pattern for just $ 164 (plus DNA testing), Lumminary is perhaps the nicest example of a trend that, just a few years ago, promised a lot. When Illumina, the sequencing giant, launched Helix.com in 2016, the idea of having a marketplace where to innovate in it, until then, boring field of deoxyribonucleic acid seemed unbeatable.
Today, Helix offers everything from typical ancestry tests to gym recommendations through DNA-based teamwork techniques. However, the general feeling is that they have failed to meet expectations. Neither they nor those who have come behind. The products and services that are on the market fall into two categories: either they are trivial or they have little scientific basis.
In October 2017, Scripps La Jolla Institute cardiologist Eric Topol calculated that one could spend $ 1,900 on such tests and learn nothing of value. Today the final account would be much higher.
What science is behind all this?
"We are facing a great ball in which you have to be very careful to differentiate what is true from what are mere correlations," Montoliu tells us. And it is that, as Topol said, the field of genetics runs a certain risk of being invaded by misunderstandings, prejudices and privacy violations. Of becoming "a jungle of tried and untested things" in which one cannot distinguish one from the other.
We usually hear that "the presence of such a nucleotide in such a position is usually more frequent in people who have a greater ability to run, a greater ability to process alcohol, or who have a certain probability of developing colon cancer." The problem that all the services that use this type of information have is that, although their backs are legally covered, they know that "they will be misinterpreted by the people who hire them", that "they will understand that these are certainties and there there is the problem. "
"You cannot convert an association by correlation, a probability that something will happen in a certainty," continues Montoliu. And, in fact, there are very few genetic markers that we know will condition 100% of cases. For example "if you have a mutation that inactivates the melanocortin type 1 receptor (MC1R) in both copies of the gene, you are going to be redhead and that is impeccable".
We are not talking about probabilities, but we are talking about certainties. The difficulty of all this is that there are not many mutations with these characteristics. "The vast majority of the genetic variations we have detected are mere correlations and we must be very careful when transmitting information there" because we cannot allow them to be confused with each other.
Prick the balloon
Unlike the new regulation of the North American FDA that inaugurated the boom in genetic testing, in Spain "legally, in order for you to undergo a genetic test, you have to be ordered by a doctor." That is, in many cases, tests that are ordered from home, no matter how many companies claim to have their own doctors, are "outside the law." Of the law and professional ethics because the recommendations of the Spanish Genetic Society make it clear that "the result of a genetic test has to be explained by professionals".
This is so because the genetic test comes with something that is often forgotten, the genetic advice. That is, the way in which we transfer the raw data of the analysis into information. Genetic mutations are grains of sand that add up on one plate or another on a phenotypic balance. Sometimes, there are grains so heavy that they tip the balance to one side or the other regardless of the rest of the grains. But the normal thing is that it is the general sum that "decides" the genetic component of our personality or the risk that we will have of generating different diseases.
That is, to organize all those grains, we need a scale: one that, for the moment, only professionals have. In the vast majority of cases, "the most we can say is that the variation you have is more related to a certain type of cancer than expected due to chance, but that does not mean that you will develop cancer yes or yes "explains Montoliu. That is what professionals should do, "but, of course, if I explain it to you this way I am pricking the balloon and the tests they sell lose interest."
This is interesting and ultimately key. The bulk of these services and products live in the unstable space that arises between the need to paint a financially promising future and the doubts that all the issues present from the genetic community. That makes many companies base their entire business strategy on playing clueless. An oversight that can often be quite expensive.