Genomic medicine approaches in research, particularly genome sequencing, has dramatically been translated into clinical practice. Finland is strongly betting to the opportunities generated by the availability of huge amounts of data and gene-based collections.
Big data is expected to actively participate in the enhancement of medical research and the consequent generation of economic wealth, in the path toward the total access of the population to health and well being. The imperative relies on the usage of massive genomic data justified by the moral principle of improving health.Finland has found a potential solution through the institutionalisation of automatic systemic data anonymisation policies in order to make healthcare data safe from cyber-attacks and accessible to life scientists
He Jiankui presented the gene-editing project that led to the birth of two baby girls with man-made C-C chemokine receptor type 5 (CCR5) mutations.The gene editing on a human germline constitutes a severe violation of both the Chinese regulations and the consensus reached by the international science community. How- ever, this incident triggered a wide-ranging discussion about the criteria and standards for genome editing in the human germline for reproductive purposes, attempting to reach a solid consensus about clear and strict policies at an international level.
Some researchers emphasise on the urgent need to improve both ethics training and scientific knowledge. In fact, present members of ethics committees are considered by the international scientific and clinical community as probably not well-positioned to assess emerging technologies rigorously on genomic medicine approaches in healthcare.