The International Bioethics Committee (IBC) of UNESCO does not hold back concerning the prenatal non-invasive testing (NIPT). In its final report on Human genome and human rights, published on October 2nd, the IBC declared that “The widespread use of genetic screening and in particular of NIPT may foster a culture of ‘perfectionism’ or ‘zero defect’ and even renew some ‘eugenic trends’ ”.
The NIPT is a test that detects genetic abnormalities, mainly Down Syndrome, based on the analysis of the fœtus’ DNA present in the mother’s blood (cf. Généthique from March 18th 2015, October 5th 2015, November 1st 2012). It was developed in 2008, put on the market in a few countries in 2011, and has been commercialized in France since the autumn of 2013. According to the IBC, these new tests “represent a technical breakthrough, but have also a significant ethical relevance”.
Technical breakthrough, because these tests, “almost always reassuring (negative)”, enable one to obtain reliable results within a short delay, and “can significantly reduce the number of invasive procedures” [1].
Pointed at by the IBC, the NIPT however also presents a certain number of “ethical inconveniences”.
- As there exists no other possible therapeutic intervention, the “more likely consequence is resorting to abortion”, thus leading to the “predestined exclusion, developed by society, of people living with the disease”. The standardisation of the NIPT bears “the risk of a “standardisation and institutionalisation of avoiding giving birth to a sick or disabled child”. More generally, the NIPT has a negative impact on “the perception of disability and on societal solidarity with disabled people and women who give birth to them.” The IBC insists on the fact that some women may feel “obliged” to have recourse to abortion and could feel “stigmatised should they refuse”.
- What’s more, there is a “risk that pregnant women with a positive result don’t await the validation of the result through invasive diagnostics, but immediately choose to abort the embryo or foetus, without adequate counselling about the relevance of the detected abnormality”, this also leading to the “destruction of healthy embryos”.
- The “anxiogenic effect” of such a test is underlined, as well as the possible drift towards a selection “based on sex”, the NIPT enabling parents to be given the sex of their baby at a very early stage of the pregnancy.
The IBC sheds the light on two paradoxes which subvert the objectives set by the NIPT:
- “The introduction of a test that may bring informed choice to more pregnant women may undermine this goal in practice.” Indeed, testing becoming systematic and perceived as an “obvious” choice to make, couples are not “fully conscious that the tests results may confront them with an important decision and that it may be extremely difficult to take.”
- What’s more, with a generalized use of the NIPT, “the number of invasive diagnostics would rise because of the use of the NIPT that should precisely be diminishing the use of invasive diagnostics”.[2]
But the major paradox of the NIPT, lies in the fact that it is presented as a “test for all”, i.e., suggested to all pregnant woman depending on its financial and institutional accessibility, justified by its “usefulness” or its “advantages for users” in term of health. The NIPT’s objective is not however “the improvement of one’s health”, but indeed “the decision to go on or not with the pregnancy”. The IBC warns the people against a possible drift towards a “social aim” that consist in reducing the cost of care, “that would imply a discriminatory practice that sends the message that these people are unwelcome in society”.
The IBC therefore recommends to take into account the following rights and duties:
- the ”right of an individual to make autonomous choices”,
- the “right to not be subjected to discrimination or stigmatisation based on genetic characteristics”,
- and the “duty of respect for every human being in her or his uniqueness”.
Nowadays, such an opinion remains isolated and should be applauded. It is to be deplored, though, that this fine analysis was not put forward, in particular in France, where, in 96% of cases, prenatal scanning leads to the abortion of embryos and foetuses carriers of Down Syndrome,.
[1] Amniocentesis and choriocentesis, « invasive » practices associated with a “non-negligible” risk of miscarriage.
[2] Indeed, because of the standardisation of the NIPT, the number of false-positives are thought to be increased, “requiring a confirmation by invasive tests”.