Welcoming the more vulnerable: do parents have a right to selection of a healthy child?
A new ruling on access to PGD techniques raises important ethical and legal issues, and opens an unavoidable debate.
Pre-implantation genetic diagnosis (PGD) refers to procedures, adjunct to assisted reproductive technologies (ART), by which an embryo is genetically analysed in order to detect some desired or undesired genetic characteristic. One typical case is when one or two cells (blastomeres) of early embryos (of 6 to 12 cells, still totipotent) are screened to detect chromosome anomalies linked with certain undesired diseases. Normally, only less than 20% of the biopsied embryos is eventually available for transfer into the uterus. The embryos which are not transferred are normally destroyed. Yet, even with regard to the embryo(s) actually transferred to the womb, the biopsy entails significant risks for his/her life and physical integrity.
In Italy, access to ART is only allowed for sterile couples or those where the male has a sexually transmitted disease (HIV, for example). Hence, Italy, together with Austria and Switzerland, are the only signatories to the European Convention on Human Rights which prohibit PGD (although twelve simply do not regulate it). However, in a ruling of last 28 August, the European Court at Strasbourg held that this prohibition violates the European Convention on Human Rights.
It is not the first time the European Court of Human Rights (ECHR) has dealt with ART (see also articles in issues 134 and 146 of europeinfos). In the present ruling (Costa & Pavan v. Italy), the applicants are an Italian couple who, being healthy carriers of cystic fibrosis and having already aborted a foetus with such a serious genetic disease, now wanted to resort to PGD for selection and transferring to the uterus of a healthy embryo. The European Convention on Human Rights establishes, in its Article 8 (2), that “there shall be no interference by a public authority with the exercise of this right (right to respect for private and family life) except such as is […] for the protection of health or morals, or for the protection of the rights and freedoms of others”.
The Italian government, without disputing the insertion of this case into the ambit of Article 8, maintained that the prohibition is an interference justified to protect the health of the mother and of the child – an expression which the Court nevertheless refused to apply to the “embryo” – to avoid eugenic deviations and to protect the freedom of conscience of the healthcare personnel.
However, what it is at stake when it comes to PGD is much more than this: PGD violates, among others, the principle of human dignity, the inviolability of the right to life and the right to physical integrity of each human being. That is why it is a grave moral wrong. The Congregation for the Doctrine of the Faith, in its Instruction Donum Vitae, 1987, affirms that “a diagnosis which shows the existence of a malformation or a hereditary illness must not be the equivalent of a death-sentence” (p. I, no. 2). Although this is stated in reference to prenatal diagnosis (PND), it is also true with regard to PGD.
Yet PGD and PND are rather different technical procedures, with important ethical and legal consequences stemming from such differences. First of all, it is noteworthy that, in the case of PND the ‘unhealthy’ being already exists; whereas in the case of PGD, a deliberate fertilization of eggs is pursued despite the high risk of creation of unhealthy embryos being already known. In PGD, moreover, there is a creation of extra embryos; some of them – even healthy ones – are subsequently eliminated. Furthermore, in PGD, the analysis of the blastomere entails also its destruction: as the blastomere is itself an embryo (in the sense upheld in the famous European Court Justice ruling in the Brüstle case), the final ‘waste’ of embryos is actually even higher. PGD also entails, as referred, significant risks for the life and physical integrity of the biopsied embryo transferred to the womb; some of these risks are inherent in IVF techniques in general. PGD costs are much higher and must be ethically assessed in the light of the principle of justice in the allocation of resources for health. Moreover, a much larger number of diseases can be tracked by PND and the reliability of these procedures is in any case much higher: that is why there is normally an indication for testing again the biopsied embryo after transfer, during pregnancy. Finally, PGD has no possible real therapeutic aim, whereas PND, at least in the abstract, might have (the Court itself, in the judgment of R.R. v. Poland, recognized that women accede to prenatal medical tests for varied reasons).
In the present case, the ECHR, in refusing to accept the Italian Government’s arguments, has focused the analysis on the consistency of the Italian law in question – which rules out PGD – with the law that authorizes the abortion of a foetus showing symptoms of cystic fibrosis. The Court wrongly endorses the idea that the “only one choice” left owing to the lack of access to PGD, in the case of an unhealthy embryo, is the resort to abortion. And assumedly because of this, the Court compares PGD not with PND but with abortion. Despite the fact that most of the above considerations are also valid from this distinct perspective (“only” one human being is eliminated by an abortion, as compared to the huge “waste” of embryos with PGD procedures, etc), none of them have been taken into consideration in the present ruling.
Firstly, the ECHR assumed, without any questioning, that the Italian law on abortion is proportionate, which should not be surprising as it already stated, in the case Vo v. France, that “it is neither desirable, nor even possible as matters stand, to answer in the abstract the question whether the unborn child is a person for the purposes of Article 2 of the Convention” (cf. also Evans v. UK).
Then, as a foetus with a chromosomic disorder associated with cystic fibrosis can be legally aborted in Italy, the Court concludes there is inconsistency (in the Italian legal system) and, hence, for the disproportionality of the interference with the couples’ right. This is sufficient enough for the ECHR which simply gives up furnishing any objective standard for assessing PGD per se. Following the Court’s reasoning, if the Italian law on abortion were to forbid so-called “therapeutic” abortion the prohibition would become proportionate – the Court, and the parties, do not object that the prohibition aims at the protection of morals and of the rights and freedoms of others – and the alleged inconsistency of the Italian legal system would vanish.
After all, without explicitly recognizing it, the Court resorts, once again, to the issue of equality, but again with rather dubious success. Even from the perspective adopted by the Court, a close analysis of the reality of PGD and of what substantially distinguishes it from PND, or from PND followed by abortion, would hardly lead to the conclusion of inconsistency of the Italian legal system and of a disproportionate interference with the privacy and family life of the applicants.
Finally, the present ruling is also unsatisfactory insofar as the Court not only reaffirms a kind of a “right to have a child” in the sense of a “right to respect for the decision to become a parent in the genetic sense » (Evans v. UK; see also Dickson v. UK, for example) or the “right of a couple to conceive a child and to make use of medically assisted procreation for that purpose” ( S.H. and others v. Austria); but goes even further: it now considers that the desire to have a child not affected by the disease in question is within the scope of Article 8; that is, there is a right to have a healthy child which can be weakened only under the conditions of Article 8 (2) of the Convention. This is not far from recognition of a right to eugenics, as has been already suggested.
As the Instruction Donum vitae puts it, “marriage does not confer upon the spouses the right to have a child, but only the right to perform those natural acts which are per se ordered to procreation. A true and proper right to a child would be contrary to the child's dignity and nature. The child is not an object to which one has a right”; on the contrary, the child himself has the right ”to be the fruit of the specific act of the conjugal love of his parents; and he also has the right to be respected as a person from the moment of his conception” (p. II, no. 8).
A request from the Italian Government is awaited for the case to be referred to the Grand Chamber of the Court. Expectations are high now for a sounder, better grounded ruling by the ECHR.