Ban lifted on medically assisted reproduction for healthy carriers of serious genetic diseases

Under Article 8 of the Convention, the Court has . . . acknowledged a right to respect for the decision to become genetic parents.

Judgment of the European Court of Human Rights, February 2013

Background

After the birth of their daughter in 2006, Rosetta Costa and Walter Pavan learned that they were healthy carriers of an inherited disease called cystic fibrosis. The baby was born with the disease, which mostly affects the lungs.

The couple wanted to extend their family. But when Rosetta became pregnant again in 2010, tests showed that the foetus was affected with cystic fibrosis. They decided to have the pregnancy terminated on medical grounds.

Rosetta and Walter started to look at other options, including medically assisted reproduction, commonly known as in vitro fertilisation (IVF), and a technique called preimplantation genetic diagnosis (PGD), which would allow them to screen and select an embryo that was unaffected by the disease.

But under Italian law at the time, medically assisted reproduction was only available for sterile or infertile couples and, since 2008, couples in which the man is a carrier of a sexually transmissible viral disease like HIV or hepatitis. There was a blanket ban on PGD.

Rosetta and Walter were therefore unable to access the treatment they needed.

Judgment of the European Court of Human Rights

The European court found that Italian law in this area was inconsistent.

On the one hand, it banned the screening of embryos, a technique that made it possible to select only those not affected by cystic fibrosis for implantation, while, on the other hand, it allowed for the abortion of a foetus affected with the same disease.

This meant that the only possibility available to Rosetta and Walter was to start a pregnancy by natural means and then terminate it if tests showed that the foetus was unhealthy.

This was in breach of Rosetta and Walter’s human rights.

Follow-up

As a result of the European court's judgment, Rosetta and Walter were able to obtain a court order in Italy allowing them to undergo medically assisted reproduction.

In 2015, Italy’s Constitutional Court found certain sections of the law on medically assisted reproduction, which were relevant to Rosetta and Walter’s case, to be unlawful. This meant that the ban was lifted. Healthy carriers of serious genetic diseases, including cystic fibrosis, can finally access the treatment they need.

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