In Belgium, the Superior Health Council has just issued a notice concerning “generalized testing within the context of procreation”. Testing is suggested in order to identify recessive genetic diseases in healthy future parents.
Reimbursed by social security, these preconception genetic tests should enable doctors to identify “serious autosomal disorders linked to the recessive X in couples who are planning on having children”. The test could be extended to couples being followed for fertility issues or for a known genetic disease. They could also “benefit from the identification of other genetic risks likely to affect their children”.
The appropriateness of this approach and its systematization causes much debate. It is clearly a form of eugenics: parents are to be enlightened before they conceive their future baby, so as to be able to take “decisions concerning procreation”. The technique is justified by the authors of the notice with the argument that it should enable “parents to reinforce their autonomy with regards to procreation”: the State is developing a policy in which it tests healthy couples, who have no family medical history, for diseases that are potentially dormant so as to invite couples not to have children but to have recourse to medically assisted procreation combined with preimplantation testing, or, as a last recourse if the women is pregnant, terminate the pregnancy… The committee indeed believes that genetic testing “should be carried out for disorders serious enough to justify adapting one’s projects concerning procreation”, and that it should “focus on disorders which manifest in childhood rather that in adulthood”. On what criterion are these choices made?
The economic incentive of the notice is revealed in a presentation that tries to sound benevolent as it is described as a means to avoiding all suffering. Indeed, testing should “include serious disorders for which therapeutic interventions do exists, when treatment is likely to generate a considerable physical, emotional or financial charge” …
To what extent are these tests reliable though? How many children will never see the light of day because their parents feared they were potentially imperfect, because they were sick? What new guilt will burden parents who do not wish to give in to this emotional and financial bargaining? Isn’t all life, even the most fragile one, worth being lived? By opening the pages of a world, still unreal but frightening, this document ends on the reader feeling slightly nauseous.
Timidly, the authors recognize that “identifying a healthy individual as carrier of a disease can involve serious ethical and judicial issues” and recommends asking the Bioethics Advisory Committee for counselling. What conclusions will be made?
For now, a pilot study is to be carried out involving a reflection over questions concerning judicial, ethical, and private life, define the disorders that are to be tested for, organize preconception counselling, assess the economic impact…