In its role of "knowledge manager" the Joint Research Centre has collected, reviewed and analysed a large set of data on the possible policy implications of how human behaviour and socio-economic outcomes may be determined or influenced by genetic factors.
It is today possible to "read" DNA, to "understand" the genetic code and to "modify" the code if some parts of it are considered as "undesirable". These developments in genetics and DNA editing open unique possibilities for example to improve the physical and mental health of individuals.
Much more public attention is given to the "modification" part as it instantly evokes an image of "playing God", picturing the moral concerns of health care for the wealthier classes and of the creation of super-beings. Much less public debate concerns the "understanding" part although this may equally impact significantly on society. For example, we know that a large majority of diseases may be explained by genetic patterns and this knowledge may lead to very early diagnostics or even prevention or cure.
But what if reports argue that "education level" is genetically determined? Or if "suicide" is? Or "sexual preference"? Or "happiness"? Such findings may not only have a profound impact on society but may "inspire" totalitarian regimes to implement measures based on genetic predispositions. Likewise, insurance companies may use this information to design individual coverage scheme, penalising the "genetically impaired" and employers may find the information in the DNA sequence of their employees more important than their expertise.
This field is moving very quickly and it is important to understand the technical background, but also the promises and pitfalls of the technology to assure its correct use and to assess the need for eventual policy interventions.
The JRC analysis on how recent developments in genetics are impacting on our health (through personalised medicine), but also on social aspects of individuals and human well-being, resulted in a report entitled "Genome-wide association studies, polygenic scores and social science genetics: overview and policy implications".
The objective of this report is not to deliver final, definite answers as to which consequences genetics and genomics might have on the society, rather, the purpose is:
- to provide an accessible entry point for policy makers and the wider public to understand the goals and tools of these developments,
- to track the progress of the field until now,
- to identify areas that are potentially relevant from a public policy perspective,
- to open a dialogue between scientists, policy makers, and the general public about how to move forward.
The utility of genomics in medicine is observed in almost all disciplines and for several applications such as:
1) sequencing of pathogen genomes to offer a rapid detection, delineation of species taxonomy and helping to deal with antimicrobial resistance and emerging;
2) rare diseases attaining a specific genetic diagnosis to improve patient management;
3) new-born screening and carrier testing for severe inherited diseases;
4) Non-invasive prenatal testing using cell free circulating DNA from mother;
5) Identification of people with inherited high risk of cancer to direct intensive screening;
6) preventive drugs and risk reducing surgery;
7) medical oncology for the management decisions and targeted drugs based on tumour genomics;
8) early detection of cancer;
9) pharmacogenomics timely and precision dosing and avoidance of life threatening drug toxicity.
All these applications have social impact as well as they open opportunities to improve social wellbeing. At the same time, they raise ethical questions and, thus, new challenges for policy makers and regulators. Scientists feel they have a moral responsibility for the results and outcomes of their work, but it is only through the definition of a coordinated policy making cycle that genomics will become the standard of care to improve social well-being in EU.
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- Publication date
- 23 August 2019