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Communication Dans Un Congrès Année : 2023

Silencing the embryos

Résumé

Preimplantation genetic testing (PGT) has opened unforeseen ways to prevent the spread of severe genetic diseases. By transferring only embryos that do not carry the targeted disease or are healthy carriers, children-to-be are ensured to never develop symptoms in their lifetime. However, transferring healthy carrier embryos may have long-term consequences as the genetic mutation and disease may continue to be passed down to future generations. France gives a particularly insightful view on the matter as PGT is tightly restricted. The French law prohibits discarding healthy-carrier embryos to counteract any suspicion of eugenics, without providing any guidelines about the information that should be given to patients about the genetic status of their embryos. Through in-depth interviews with PGT patients and professionals, as well as ethnographic observations in one French PGT centre, I will explore in this paper the issues raised by the disclosure of information about the genetic status of the transferred embryos to the patients and the consequences on future generations. PGT professionals made the decision to not fully disclose this information, leaving the patients with only the knowledge that their embryos could be, potentially, carriers and that they have the responsibility to inform their future children of this potential risk. Some patients may feel that the PGT procedure was done in vain, as the mutation and disease may still circulate in their family. Professionals are concerned about the potential loss of this information and its effects on future generations.
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Dates et versions

hal-04273605 , version 1 (07-11-2023)

Identifiants

  • HAL Id : hal-04273605 , version 1

Citer

Anne-Sophie Giraud. Silencing the embryos: Information practices about a potential risk in preimplantation genetic testing in France. 4S. Sea, Sky, and Land. Engaging in Solidarity in Endangered Ecologies, Society for Social Studies of Science, Nov 2023, Honolulu (Hawaii), USA, United States. ⟨hal-04273605⟩
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