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United States: a report advocates better protection of medical confidentially in sequencing the genome

Publié le : 12 October 2012

In a report published on Thursday 11 October, the Presidential Commission for the Study of Bioethical Issues, made up of independent experts, states that "medical confidentially is not sufficiently protected by the present legislation in the United States in the case of genome sequencing.". According to the Commission, this situation could "handicap research." In this regard, the experts "deplore the difference in the protection arrangements. The genetic data of a person derived from the sequencing of their genome carried out by their doctor’s clinic will be protected by medical confidentially but not if the same procedure is done for research purposes."

Hence, while "the sequencing of the human genome is becoming increasingly affordable and thus leads to more applications in research and at clinical level, potentially leading to major medical advances," it turns out that "this development also raises ethical dilemmas" according to the authors of the report who have issued "ten recommendations to reinforce the regulations protecting the confidentiality of individual genetic information." T

he chairwoman of the Commission, Amy Gutmann, explains that "the aim of the Commission is to find the means to reconcile the enormous medical potential of the sequencing of the whole genome of individuals with the pressing issue of access to the data and their confidentiality raised by the rapid emergence of low-cost sequencing." The report points out that "people who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality," in the case of genetic predispositions to diseases such as Alzheimer’s, diabetes and cardiovascular diseases. The journalist reminds readers that "such data could for example be used by employers or medical insurance companies to the detriment of the person in question," adding that, according to the experts, "in the absence of sufficiently solid procedures, there will be probably less volunteers for having their genome sequenced."

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