Personalized medicine and health are constantly evolving fields. This is also reflected in a series of publications by the SAMS and other members of the Swiss Academies of Arts and Sciences in recent years.
Personalized health under discussion
The issues raised by progress in personalized health will sooner or later affect the entire population. In order to find out what ideas, expectations and fears are associated with these developments, the Science et Cité Foundation, in collaboration with the SAMS, the Forum for Genetic Research of the Swiss Academy of Natural Sciences (SCNAT) and the Réseau romand Science et Cité, conducted between 2017 and 2020 the dialogue project «Tailor-made people: personalized health». This project is a good example of successful collaboration between different members of the Swiss Academies of Arts and Sciences.
The document published in the spring of 2020 looks back at the answers given by the population to the questions asked online and during the nine public debates that took place throughout Switzerland between 2018 and 2019. The answers were neither scientifically collected nor evaluated according to scientific criteria. The publication does, however, provide a picture of public opinion and may provide experts with points of contact and inspiration for future research work.
Published in 2021, the final report on the project assesses the three phases of this initiative: the collection of opinions via an online survey, public debates, and the provision of learings form the public back to the scientific community. This final report is available in French.
The French-language components of the «Tailor-made people» project were supported by the Fondation Leenaards as part of its Personalized Health & Society (SantéPerSo) initiative. To ensure that the lessons learned from the ten SantéPerSo projects supported between 2017 and 2020 are not forgotten, a publication on pursuing and strengthening citizen participation offers recommendations on how to present personalized health to the public, what topics should be given priority in future debates, what target groups should be addressed, and what formats should be chosen, depending on the desired degree of participation.
Fundamentals for the training of health professionals
Convinced that health professionals should have a common basic knowledge of personalized medicine, the SAMS has published in 2019 a guide for pregraduate, postgraduate and continuing interprofessional education. The publication was conceived as a reference document presenting the current state of knowledge. It is available in French or German and can be downloaded in either full version or as individual chapters.
White Paper «Big Data in Healthcare»
In 2014, the Swiss Academies of Arts and Sciences conducted an interdisciplinary workshop on «Big Data in Healthcare». Experts summarized the results of the discussions in a white paper published in the «Swiss Academies Communications» series.
Potential and limitations of personalized medicine
As early as 2012, the SAMS examined personalized medicine in a publication that already highlights the tension between new perspectives for understanding the origin, evolution and treatment of diseases on the one hand and potential abuses on the other, such as the issue of data protection or transparency. The position paper emphasizes the need to find a new balance between taking account of these rapid changes and the personal relationship between doctor and patient.
Information portal «Personalized health explained»
The Forum for Genetic Research of the Swiss Academy of Sciences (SCNAT) operates an information portal on the topic of personalized health, covering methods and applications, the current state of research, the legal framework, economic aspects, etc. This information is continuously updated and expanded. The target group consists of members of the public who have limited knowledge in this area but are interested in biology and health. Visit the online platform in French or German.
Evaluation of technological choices
New applications related to personalized medicine enable progress, but they can also have a range of more or less intentional effects. The role of TA-SWISS is to investigate and present the whole spectrum of possible consequences of technological choices and to present them in such a way that each and every individual can form his or her own opinion. In 2018 TA-SWISS published a study on quantified self and in 2014 an expert study on personalized medicine.
ta-swiss.ch/personalized-medicine (in German)