ESHG PPPC Comments on postmortem use of genetic data for research purposes

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Fellmann, Florence | Rial-Sebbag, Emmanuelle | Patch, Christine | Hentze, Sabine | Stefandottir, Vigdis | Mendes, Álvaro | van El, Carla | Cornel, Martina | Forzano, Francesca

Edité par CCSD ; Nature Publishing Group -

International audience. A large number of biobanks are constituted worldwide formany different research purposes. The number of storedsamples is increasing, representing a significant proportion ofthe population in some countries. There is a time lag betweensample collection and any potential analysis. Some biobanksaim to collect samples of individuals affected with specificdisorders, which can be associated with early death. It istherefore evident that a proportion of samples in biobanks willhave been collected from individuals who will be deceased orwhose circumstances have changed at the time potentialresults from analyses are generated. The researchers or bio-banks curators are not informed of the death of participants inthe vast majority of (if not all) cases. Therefore, researchersproceed with the contribution of those samples withoutmaking a distinction between “still alive” and “deceased”.The continuing use of samples postmortem is more implicitthan clearly expressed in the current regulations.

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