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Carrier screening is a test carried out before conception for couples who are at risk of passing on a genetic disease to their offspring. Ghent University Hospital recently asked the government to reimburse the cost of these genetic tests for all couples who wish to undergo them. In the event of such a reimbursement, the more systematic use of preconception tests would raise serious concerns. In future, if a risk of genetic disease were detected, would couples really be free not to turn to in vitro fertilization (IVF) with the aim of selecting the embryo or embryos free of the gene to be eliminated?
Gene expression remains subject to uncertainty. If both parents are carriers of a mutation, there is a 25% risk that their child will develop the disease. Despite this, Professor Paul Coucke, molecular geneticist at the Centre for Medical Genetics at Ghent University Hospital, is campaigning for the test to be reimbursed. At present, the genetic carrier test costs €1,500, which is borne entirely by the couple, and this discourages some people from having it done. However, according to the hospital, the price is not the only argument put forward by couples who refuse the test. The fear of knowing too much about the risks of transmitting a disease is also mentioned. Won't the reimbursement of this test put indirect pressure on couples, jeopardizing their peace of mind? Furthermore, will it still be possible, from a societal point of view, to choose not to have the test and still give birth to children suffering from a pathology or carrying a disability?
The question arises as to whether this reimbursement would not be motivated by financial arguments, insofar as this test would lead to the systematic elimination of any risk of hereditary disease in children. The transition from a medicine that cures to a medicine that selects is already underway through pre-implantation genetic diagnosis (PGD). Carried out at the time of artificial procreation by IVF, this test is currently reserved for couples at risk of passing on to their child a particularly serious genetic disease that is incurable at the time of diagnosis. If preconception tests were to become widespread, it is to be feared that couples with no reason for infertility and no certainty as to the risk of transmitting a disease of which they are only a carrier would turn to artificial procreation in order to select embryos free of the problematic gene.
The prospect of the couple being able to have recourse to PGD if a risk were detected via this genetic test is also put forward by the Ghent hospital, without the ethical problems inherent in the PGD technique being raised. Is it justifiable to eliminate certain embryos through eugenic selection in order to ensure that healthy children are born? From this perspective, the question also arises as to where the hunt for bad genes will end. Recently, a couple told the press that they wanted to use IVF and PGD to prevent their future second child from suffering from the hearing loss observed in the first. Could the widespread use of these tests lead to the risk of searching for the perfect child?