Carlos Bezos reflects on social expectations in the field of biotechnology, after the publication of his first text on genomics: “The genomic bubble and strategies focusing on patient’s needs”.
Who inflates the bubble?
Evans’ article identifies several culprits responsible for the genomic bubble: researchers hungry for recognition, with good research jobs and budgets, who would tend to oversell their research work under pressure by investors eager to quickly market the result of their investments. Secondly, the emergence of genomics companies selling directly to consumers, such as 23andme, which was recently warned not to continue marketing its tests due to lack of scientific evidence on the results. These companies, with large marketing budgets, tend to exert strong pressure on their researchers to exaggerate the expectations on biotechnology. Unrealistic expectations which, according to Evans, are encouraged by the press and which, contrary to the intention of their creators, generate fear and rejection among the population.
How expectations on biotechnology are built
One of the most surprising aspects about scientists building high expectations on genetics is that such expectations are far removed from patient demands. In other words, products are created for which there is no demand and, to a certain point, unlike other goods, the need for them is not generated on the market either. Preconceptional tests are a good example: they are heralded as a scientific revolution that will end monogenic diseases. Despite the fact that one of the worries of pregnancy is knowing if the child is healthy and that these tests offer the possibility of determining the risk before pregnancy, few patients are interested in tests that are applied to diseases with less than a 1% probability of developing (except among high-prevalence populations).
The extent to which patient reality differs from scientific research can be seen in the genetic diagnosis applied to fertility treatments. Scientists and doctors ask themselves why society fears genetic research and why the media focus on design babies or on genetic control by powerful multinational companies, since their research and clinical reality are not focused on gene design and trade. The truth is that the views of scientists and doctors are precisely the reason why society rejects genetic research.
Marketing narratives divorced from patient needs
All too often, narratives from science promise a better, disease-free world. However, they have the opposite effect: they raise fears among the population about the dangers of genetics and scientists playing God. The same fears that are then used by conservative groups to push against research, and by part of the media to reinforce the fears sensationalism resorts to (design babies, state control over genetics, gene trading) as a sales strategy. We should remember that when making or opposing laws, politicians are fighting in the political arena using the same arguments as the media, because what they want is media impact, not necessarily to solve problems.
Scientific narratives are built by marketing specialists who work for the laboratories, but they are not created with the patients. A patient-focused research approach, as well as the co-creation of genetics services with the patients, would probably create not only narratives with a more positive impact on the media, society and politics, but would also achieve a better product and a better design of services.
The British case
Great Britain is a country where, at least indirectly, the opinion of patients carries weight. And this has contributed to its industry becoming a world leader in genetics applied to fertility, while at the same time it has guaranteed the highest ethical standards and the strictest regulations on research. The United Kingdom has opted for an approach based on what is acceptable and what is not acceptable for society, in accordance with the recommendation by Mary Warnock, when she drafted the report for the 1990 Act on Human Fertilization and Embryology, whose process is described by Warnock herself in a BBVA Open Mind article.
Although a philosopher, Mary Warnock chose a sociological and anthropological point of view. She based her work on what people actually do, not on what narratives say. In this way, what was not acceptable in 1990 is now acceptable, and social changes are incorporated into legislation.
IVF-SPAIN project manager and Recombine Europe manager