Anne Cambon: an ethical vision of genetics 2.0
Research from expert immunogeneticist Anne Cambon-Thomsen studies the public health impact of new genetics 2.0 techniques.
Genetics 2.0 has created a new panorama in medicine: treatment is more precise and personalised than ever before. New techniques, such as the well-known CRISPR, allow us to know the genome of an individual in detail, more easily detect possible rare diseases and, even, edit faulty genes. But how will genetics 2.0 affect public health? To what extent can people tolerate knowing how prone they are to inheriting certain diseases? Expert in immunogenetics, Anne Cambon-Thomsen, studies the ethical and social impact of having such profound knowledge of our genome and thus having the capacity to modify it.
With a Doctorate in Medicine from the Paul Sabatier University of Toulouse (France), Cambon-Thomsen raises the following question: now we have the possibility of reading the genome in detail, what are we going to do with it? Her research revolves around this contemplation: how one works with the genome and how we use the information we obtain from it. For example, various data could be released to public institutions in order to monitor the evolution of diseases and therefore improve public health.
However, we must also ask ourselves if a person’s genome should be released publically at all? These and other questions have informed the research carried out by Anne Cambon-Thomsen as Research Director at the French National Centre for Scientific Research (CNRS) and as a member of the scientific advisory committee at the French National Institute of Health and Medical Research (Inserm).
She explains that, faced with the technological advances occurring in the field of genetics and the birth of new businesses that analyse the genome, an ethical approach is required, one that allows us to implement the new techniques in an appropriate way. Medical procedures must not infringe on patients’ rights. One of the key issues has to do with the confidentiality of person’s genome data.
We must ask ourselves whom does this information belong to- to the patient or to the company- and if the companies have an obligation to release data to other institutions to undertake research on the development of certain diseases. So-called unexpected discoveries- uncovering genetic make-ups of unknown significance that may lead to disease- also lays way to another difficult issue. The debate lies in whether we believe patients should be made aware of those discoveries and if so, when they should find out and how they are going to be told.
These are some of the many questions that the world of genetics 2.0 unearths and questions not just for doctors to address as we’re talking about issues that affect many parts of society. One of the guest speakers at the latest edition of EmTech France 2017, Cambon-Thomsen has brought together teams consisting of doctors, chemists, lawyers, sociologists, philosophers and economists to resolve these dilemmas.
According to this expert, true progress is not just the ability to analyse vast amounts of data but knowing how to use it in a way that takes into account people. This will help patients to understand their disease and know how to plan their life. It is clear that technology has paved the way for great progress in the medical world but the core of medicine must not be data, but the more important factor: people.