In September 2014, the French media focused on the case of little Titouan, an extremely premature baby whose parents wished to withdraw life support. This week, the press has highlighted the first in-utero operation performed on a foetus with a congenital deformity (Gènéthqiue press review on November 19th, 2014). Both cases have triggered an ethical debate surrounding newborn babies with a high risk of handicap. This debate has been raised by Laurence Henry, Jean Vanier and Philippe de Roux in a forum published on the weekly website, La Vie.
“In a world where performance is perceived as the end result, what do we say to advocates of ‘free’ choice, opting to end the life of a child who is not terminally ill but who would certainly have a disability?” enquire the three authors. “What should we do for these children who are not terminally ill and do not rely on any replacement technique but who require temporary artificial feeding?” he added.
Prior to the 2005 Leonetti law relating to patients’ rights and the terminally ill, euthanasia was often carried out at the doctors’ discretion. For the most part, parents were unaware of such decisions, explained L. Henry, J. Vanier and P. de Roux. In practice, however, “the consequences of this ‘ethical flaw’ are far from neutral in terms of the moral payload experienced by nursing teams”. Although “the Leonetti law has clarified matters and promoted highly positive advances in management, […] the withdrawal of medication is still subject to contradictory interpretation”.
One major question remains: “Who is capable of deciding whether life is worth living? On a wider scale, who can assume the authority to choose between children with brain lesions or a different handicap and other children? How can we help our culture to advance and be more accepting towards fragility and handicap in a world where hospitals constantly find themselves under increasing financial pressure? Firstly, by highlighting the deep-rooted cause of this flaw: the fear and panic that differences, fragility and handicap can generate in each and every one of us. Insidiously, under the guise of ‘humanity’ or ‘realism’, this prevailing pessimism has triggered eugenic spin-offs, the most striking of which is the abortion in France of 96% of foetuses diagnosed with Down syndrome”.
Although the term ‘eugenics’ “conjures up dark periods, it describes the reality of a sorting mechanism clearly at work at the very heart of our democracy”, concluded L. Henry, J. Vanier and P. de Roux.