On January 21, 2016, the French National Ethics Advisory Committee published its notice N° 124 entitled: Ethical reflection on the progress of genetic tests linked to very high speed human DNA sequencing.
This notice follows N° 120, dated April 2013 on “ethical questions related to the development of fetal genetic tests on maternal blood”. The committee had emphasized that it was only the first step of a wider reflection on all issues concerning widespread use of high speed DNA sequencing and its medical and societal implications.
As the Ethics Advisory Committee emphasizes, genomics using today’s high speed DNA sequencing contributes to fostering a gigantic data base of people’s health (« big data ») which raises considerable ethical issues, especially in the legal sector of personal privacy.
At the crossroads between fundamental research and clinical medicine, the technical progress already accomplished and currently being carried out in the area of human genomics raises questions on several aspects: personal, familial and collective life in society all at once.
This report evaluates numerous questions, especially those of confidentiality, autonomy, screening prior to conception, the right to know, or not to know, and recalls that the genome is at the boundary line of the individual’s intimacy, mankind’s heritage and our collective well-being.
However, this report is only dedicated to genetic testing progress by very high speed DNA sequencing. Yet to be addressed are considerable ethical questions related to procedures of intervening on human DNA, such as in the area of somatic cells (genetic cell therapy) or that of reproductive or embryonic cells (germ line genetic therapy) using for example the CRISPR-Cas9 technique.
As Alliance VITA’s general deputy, Tugdual Derville recalls, this deals with a major preoccupation, for which the Committee announces having initiated reflection.
