Bio-ethics under Human Rights Scrutiny: Toward a Right to Pre-implantation Genetic Testing under the ECHR?

This guest post was written by Adriana Di Stefano. Adriana is a tenured researcher and lecturer in international law at the Faculty of Law of the University of Catania. Her areas of expertise include international humanitarian law, human rights law and EU Law.

On August 28th, 2012 the Second Section of the European Court of Human Rights delivered the long-awaited judgment in the case of Costa and Pavan v. Italy (application no. 54270/10, lodged with the European Court on 20 September 2010). The questions raised in Strasbourg originated from the application of an Italian couple – Mrs Rosetta Costa and Mr Walter Pavan – who, being healthy carriers of cystic fibrosis, desired to resort to medically-assisted procreation and genetic screening in order to avoid the risk of transmitting the disease to their descendants. Relying on Articles 8 and 14 of the European Convention on Human Rights, they complained that the Italian Law (no. 40 of 19 February 2004, “Norme in materia di procreazione medicalmente assistita”), banning couples of healthy carriers of genetic disease from in vitro fertilisation and embryos pre-implantation screening, violated their right to respect for private and family life and the prohibition of discrimination as enshrined in the Convention.

The assigned Section, chaired by Judge Tulkens, held, unanimously, that there had been a violation of Article 8 (right to respect for private and family life) of the European Convention on Human Rights, dismissing, as manifestly ill-founded, the claim under Art. 14. In brief, the international judges emphasized the inconsistency in Italian law denying the couple access to embryo screening, while authorizing medically-assisted termination of pregnancy if the foetus had showed symptoms of the genetic disease. The Court concluded that the interference with the applicants’ right to respect for their private and family life, even if “prescribed by law” and in pursuit of a “legitimate aim” under Article 8 § 2, was disproportionate and thus exceeded the “necessary in a democratic society” test.

The factual and legal backgrounds of the case are worth mentioning, as are the familial history of the applicants and the last trends of domestic case-law and political debate on these sensitive issues. Having discovered to be healthy carriers of cystic fibrosis in 2006 when their first daughter was born suffering from this serious genetic disease, in 2010 the Costa-Pavans again found out – during a second pregnancy – that the foetus (screened through pre-natal testing) was affected by the same sickness and procured therapeutic abortion. Still wishing to have a child, the couple wanted to make use of in vitro fertilisation (“IVF”) and pre-implantation diagnosis (“PID”), so that the embryo could be genetically screened prior to implantation.

The Italian legal regime allows IVF (as included in the category of “procreazione medicalmente assistita”) only for sterile or infertile couples (art. 4, Law no. 40/2004,  further defined as adult couples of opposite sex, married or cohabiting, of child-bearing age potential, both living, Art. 5) or those in which the man has a sexually transmissible disease, such as HIV or hepatitis B and C, to avoid the risk of transmitting the infection (this latter category was included in a broadened list of normative beneficiaries by a Ministerial Decree of 11 April 2008). The said legislation, allegedly affecting the applicants, doesn’t directly deal with the core issue of pre-implantation screening, whereas it practically prohibits – without giving any legal definition of “embryo” – experimentations and selections for eugenic purposes on human embryos, only allowing the research for therapeutic and diagnostic aims strictly related to the health and the development of the same embryos (Arts. 13-14). Moreover, Law no. 40/2004 expressly refers to Law no. 194/1978 regulating abortion (22.5.1978, “Norme per la tutela sociale della maternità e sull’interruzione volontaria della gravidanza”) by general normative formulas (see Art. 14 § 1), leaving plainly undetermined some interpretative questions about the systematic consistency with constitutional rights and values. The domestic legal norm making-process of Law no. 40/2004 barely gathered a shared consensus in both catholic and secular milieus and has been eventually amended by the Constitutional Court (Judgment no. 151/2009, 8.5.2009, which declared the unconstitutionality of  Art. 14 §§ 2-3, due to the unreasonable contrast with Arts. 3 and 32 of the fundamental Charter, as read in combinato disposto).

Besides lights and shades of domestic debates on possible legitimate interpretations consistent with fundamental rights and bio-ethical principles, it appears clear that the Strasbourg judgment promptly stresses and pushes forward an ongoing national process of review and progressive amendment of normative approaches to such fundamental matters.

The Chamber’s point of view

Subsidiarity and proportionality can be considered the two key-words of the judicial ruling in the case. Both well-known fundamental principles of Strasbourg’s human rights review reveal the (yet unusual on bioethical matters) straightforward approach of the Court both at the admissibility stage of the procedure (the former) and at the further evaluation on the merits (the latter).

The Court’s ruling on the preliminary objections first confirmed the quality of «victims» of the Costa-Pavans which had been directly affected by the legal prohibition complained of (as being healthy carriers of the genetic disease – yet transmitted to their first daughter – and having terminated a later pregnancy due to the same pathology diagnosed to the foetus). It also dismissed the related exception of actio popularis, since they were not complaining in theory of the incompatibility of the Law no. 40 with conventional rights, instead denouncing to the Court to be victims of human rights violations directly produced by the same Law.

The Chamber emphasized then the alleged lack, within the domestic system, of available and effective remedies (in the meaning of Art. 13) for the violation of the couple’s Convention right. The Strasbourg judicial pro-applicants’ approach clearly appears here in the recognition of an exception to the rule on the exhaustion of domestic remedies. Indeed, the only relevant comparable case, positively decided by the Salerno Court (on January 13th  2010, authorising a non-sterile couple of healthy carriers of muscular atrophy to use PID) could not be considered, according to the European Judges, as part and parcel of any jurisprudential trend in favour of the applicants.

Without mentioning the principle, the Chamber’s approach shows some interesting implications of the subisidiary role of the international jurisdiction vis à vis national authorities. In the Strasbourg practice, the subsidiary two-ways rationale of the conventional monitoring system (which is not just a means of protecting national jurisdiction from external interferences) implies the primary role of national institutions for the protection of conventional rights (as expressed by the “close affinity” of the rules under Arts. 13 and 35), insofar as they prove their (actual or potential) “capacity” to remedy alleged human rights violations contrary to the Convention.

Let’s turn to proportionality, having a look at Strasbourg’s conclusions on the merits. Having declared the claim as falling within the scope of Art. 8 of the Convention, the Court held that the applicant’s exclusion from access to the techniques of “procreazione medicalmente assistita” amounted to an interference with their right to respect for private and family life which was “in accordance with the law” and pursued the legitimate aims of protecting morals and the rights and freedoms of others (“…ce qui n’est pas contesté par les parties”, Costa-Pavan, § 59).

Interestingly, when first motivating the applicability of Art. 8 of the Convention, the Court dismissed the point of the respondent State relating to the alleged violation of a “droit à avoir un enfant sain”, qualifying the right of the claimants as limited to the possibility of having access to medically-assisted procreation techniques and then to PID, as to have a child not affected with their genetic disease. The Court further observed that the notions of “embryo” and “child” must not be confused (besides, even the Law no. 40/2004, whose normative scope includes the protection of unborn human life, avoids to address any kind of assimilation between embryo  and human being/persona).

In determining if the proportionality test had been satisfied, the Chamber mainly considered the extent of the interference in the circumstances under review and the possibility that the same public interest aims could have been achieved with less intrusive impact on individual rights. In fact, in the event that the foetus proved to have the disease, a medically-assisted abortion would have produced far more serious consequences for both the foetus and the parents, particularly the mother: this legally allowed alternative solution could be hardly reconciled with the Government’s justifications of the blanket prohibition of PID (the need to protect the health of the mother and child, the dignity and freedom of conscience of the medical professions, and to avoid the risk of eugenic abuses). Then, the Court held,

Force est de constater que le système législatif italien en la matière manque de cohérence. D’une part, il interdit l’implantation limitée aux seuls embryons non affectés par la maladie dont les requérants sont porteurs sains ; d’autre part, il autorise ceux-ci d’avorter un fœtus affecté par cette même pathologie …

The Court stressed the difference between this case, which concerned PID and homologous insemination (the only kind of medically-assisted procreation allowed and regulated by the Italian law) in connection with the interpretative issue of the proportionality of the domestic prohibition, and that of S.H. v. Austria, about the prohibition to resort to specific techniques of heterologous fertilization (ivi the Grand Chamber concluded – although with some hesitations and contrary to the previous judgment of the first Section of the Court – that, in respect of the ban complained of, the national legislator, at the relevant time – i.e. in 1999, years before the Strasbourg ruling – had not exceeded the margin of appreciation afforded to it).

Moreover, resorting (as usual when ruling on the extent of the margin of appreciation afforded to national authorities) to a comparative overview of the law and practice relating to the topic at issue, the Court highlighted that of the 32 Council of Europe member States whose legislation it examined, PID was only prohibited in Italy, Austria and Switzerland (access regulation to PID was currently under review in Switzerland). Given this broad emerging  normative consensus on such complex questions of European “public bio-ethics”, the Judges observed that the inconsistency in Italian law – prohibiting the implantation of healthy embryos – left the applicants only the last, one hard choice of terminating a new pregnancy if prenatal tests showed the foetus to have the disease. They accordingly held that the interference with the applicants’ right to respect for their private and family life was disproportionate, in breach of Article 8.

Finally, as mentioned above, the Chamber dismissed the further complaint under Article 14 of the European Convention as being manifestly ill-founded in that, as for the access to PID, couples in which the male partner was infected with a sexually transmissible disease were not treated differently from the applicants, as the prohibition complained of generally applied in Italy to all categories of people. There wasn’t therefore, in the circumstances of the case, any violation of Art. 14 of the Convention, taken in conjunction with Art. 8. The legal (and strong) argument of the Court on this point follows the Strasbourg general approach on the meaning of “discrimination” under Art. 14. However, it could appear somewhat too formalistic, leaving apart the substance and complexity of any alleged discriminatory treatment on these matters. Instead, generally-speaking and as showed by the undergoing constitutionality questions, the strict and blanket approach of the Italian legislation still lacks clarity, practicability and coherence, potentially determining systematic and multiple discriminations, inherent to the same legal regime: from the prohibition of hetorologous fertilization (whose violations are not even criminalized, but significantly subjected to administrative sanctions), to the (at least problematic in our case) distinction in the access to medically-assisted procreation treatments (beforehand PID) between couples whose male member suffers from sexually transmissible diseases (admitted) and couples not actually sick but wishing to preserve their offspring from genetic illnesses (excluded).

Conclusion

When the Costa-Pavan judgment gets down to the nitty-gritty of the matter, touching on a sore point bioethical questions widely unsolved in Italy, the essential and scanty style of the judicial ruling strikes the reader, who is led downright to the crosscutting and conclusive arguments of the proportionality test. This conciseness, which doesn’t result in a lack of clarity, is probably due not just to the Court’s “decision to decide”, but (also) to the clarity of the case with respect to the Convention’s interpretative doctrines. The main points of the Chamber’s technical reasoning were basically three: first, there was a straight normative discrepancy in the Italian legal order; second, there was a reasonable concurrence of opinions within the Council of Europe member States as to the questions at issue; third, the objective harmful effects of the domestic legislative act on the rights and interests of the applicants were unreasonably disproportionate under the orthodox reading of the margin of appreciation theory. Interpretation is a difficult task, always more entailing sharp decisions as far as bioethics and human rights law matters are concerned.

Ultimately, Costa and Pavan vs. Italy is a sound judgment of the European Court. This interesting example of international “judicial activism” looks tricky enough to be counted among (one of) the last products of the Tulkens season, leaving at Strasbourg a heavy and rich legacy of judgments and opinions, as well as many good reasons for believing in the strengthened role of the conventional system as a “living instrument” of the “European public order”.

 

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