Genetomania, promises and the harsh reality

It has been three decades since we were promised the earth and since all diseases would be a thing of the past. Immortality was almost planned (by 2045) according to Kurzweil, Google’s guru; the non-genetic cognitive research was old and condemned to vegetate and be maintained by dinosaurs. It is sometimes quite funny to see what happened to these promises. For example, Francis Collins, a senior National Institute of Health official, predicted in 2000 “I would be willing to make a prediction that within 10 years, we will have the potential of offering any of you the opportunity to find out what particular genetic conditions you may be at increased risk for based on the discovery of genes involved in common illnesses like diabetes, hypertension, heart disease and so on” (Francis Collins, Press Conference, NIH, June 2000). Since then, it turns out that the overwhelming majority of these plagues is due to the environment and our way of life, genetics intervening to less than 1%. Thus, any discovery based on genetic information will interest in the best case 1% of the patients. In the same way, hundreds of mutations possibly involved in autism have been identified: in fine to have a good diagnosis, it is necessary to regroup dozens of them and 10-15% of the children are concerned! There are countless unfulfilled promises, such as for cystic fibrosis – a single mutation, so easy to solve, except that 2000 modifications of this mutation have been identified and as they can occur on each allele, we are talking about 4 million possibilities; how can you beat that? As the reality is stubborn, we then witness spectacular reversals.

Thus, Laurent Alexandre, the self-proclaime expert in everything related to modern technologies and genetics and who promised us the immortality for tomorrow in the columns of Le Monde, thanks to a clever mix of biotechnology, genetic, IT and big-data, will go through a rough patch. In his latest editorial in Le Monde, he declares that “Winter is coming” and that nothing works anymore in this trailer of promise. With a cheek that forges admiration, he criticizes “the researchers who made insane promises to their sponsors”. “A winter of the biotechnologies is quite possible. The engineering of the living – stem cells, genetic modifications, artificial organs – is supposed to be able to treat the degenerative diseases and accelerate the decline of the death. But between technological fantasies and the commercialization of a well-considered treatment, there is a huge gap that some researchers and start-ups do not know”. Bravo l’artiste, who said exactly the opposite less than a year ago. The trick is well known, overselling promises (Ted talks, TV, radio, etc.) to become the favourite of the media; then we discover the reality and burn the golden calves we worshiped.

Beyond the question of why the media are focusing on incompetents rather than inviting researchers working on these topics, there remains the problem of the political implications of this fascination for the genetomania and Big Data. We cannot overemphasize the huge sums consumed by these trends that will not cure much, because to understand and treat these diseases and especially brain diseases, we must study the mechanisms of the disease: how does it develop ? what is the crucial role of living conditions? Unfortunately, these questions will not be asked because not modern and not fashionable. This fascination with the programmed furiously recalls the “there is no alternative” of certain policies and it is not quite a coincidence that the balance of ideas that has turned to the right is even questioning the notion of races based on arguments whose nullity is striking. But it fits well with the political menu of the day. Gramsci was right: we start by dominating the ideas before dominating everything. Here we come.

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