‘New IVF amendments discriminate against persons with disabilities’ – Life Network Foundation

The new IVF amendments discriminate against persons with disabilities, essentially saying that persons with disabilities ought to be discarded, chairperson of the Life Network Foundation Miriam Sciberras told The Malta Independent on Sunday.

Government has pledged to reform the in-vitro fertilisation legislation within the first 100 days in office with the aim to give couples with multiple unsuccessful IVF treatments or have not had luck in getting pregnant, a chance to become parents. Health Minister Chris Fearne had recently announced several amendments to the law, one of which will allow genetic testing prior to implantation to enable doctors to look out for certain monogenic disorders.

This would allow prospective parents to know of complications in the embryo, leaving it up to them if they want to go ahead with implantation. If not, embryos with such a condition would not be discarded but can be given up for adoption, Fearne had said.

The Malta Independent on Sunday spoke with Sciberras after the release of a statement from the Foundation saying that the amendments do not secure healthy babies. Sciberras deemed the proposal as “nothing short of eugenics”.

Asked to explain fully their opposition to the government’s proposals, Sciberras said that the Foundation is not against government helping couples who are trying to have children, but rather the proposal does not give value to each embryo.

“Our preoccupation is that through the amendments we will be choosing which embryos are worthy of being born or not. Those which are healthy will proceed to implantation while those found with a condition are discarded. We are choosing between humans in that way,” Sciberras said.

Sciberras said that it is not ethically acceptable to try and persuade the public that embryos which are frozen and put aside will be adopted by other parents, as this would not be the case.

“How do you expect a situation where these embryos will be adopted by other parents if they have been discarded by their own?” Sciberras asked. She said that this also creates a divide between those who do not have conditions and those who do.

“There is also no guarantee that the ‘healthy’ embryos will not contract a condition later down the line. No type of Prenatal Genetic Diagnosis (PGD) or screening at any stage of pregnancy is 100% accurate. If there’s a complication in the foetus, then what do we do? We discard the foetus as well?” Sciberras said.

She said that the law breaches the code of ethics and morals as “life has value from conception till death”.

Asked if the claims of the law being discriminatory against persons with disabilities are an exaggerated approach, Sciberras replied in the negative, saying that there are people with diseases such as Huntington’s disease, who are living normal lives.

“The message government is giving through the law amendments is that these people with disabilities should never have been born, and that is not right,” Sciberras said.

Sciberras was asked whether she thought it was government’s intention to try and reduce the hardships disabilities often bring about for couples who want children. She said that hardships will not be reduced if the embryos are simply eliminated.

Doctors for Life said in a statement that Polar Body Testing is a more ethical option as it allows for the possibility of detecting an abnormal number of chromosomes as well as maternal single gene diseases. The method will address parental concerns by screening for specific conditions, which is done before the embryo is formed, and not after.

Sciberras said that this form of support given before the embryo is formed would reduce the most hardships, without there ever being the need to discard the embryo. She said that the solution should not be that the embryo is removed, as that means life is removed.

Asked if the Foundation plans to take legal action against government should the IVF law amendments remain as they are, Sciberras replied in the negative, and said that there needs to be appropriate consultation regarding this.

“Government has a strong mandate to lead but government must lead in the interests of every citizen. If this country is truly one which puts equality at the forefront, let us not create minority groups such as those discarded embryos,” she said. Sciberras added that the principle of equality should not exclude anyone.

“We should be doing more research, not freezing more embryos knowing no one will adopt them. That is not helping, it is a lack of humanity,” Sciberras said.

Sciberras said that the Foundation will continue to draw the attention of the public, as it wishes for the discussion to open for a more mature debate which includes more people. 

“What is being proposed does not respect life in its totality and certainly does not meet the fundamental principles of equality. We cannot have celebrated the Special Olympics last month and then a month later propose a law which does not allow the birth of persons with disabilities. These people are not second-class citizens. There is no logic in the law,” Sciberras said.

Asked what kind of amendments the Foundation wishes to see, Sciberras said that government should consider other treatments such as Polar Body Testing and to stop considering testing on embryos.

“Testing on embryos should not be considered as life has been created and that life has the right to be born and protected,” Sciberras said.

Doctors for Life had also said that not a single one of the 388 “normal” embryos frozen since the embryo freezing law came into effect has been adopted so far. Sciberras said that there was an increase in the stockpile of embryos since the law was passed, from 180 to over 300 frozen embryos.

“We have said since the beginning that the law will result in a stockpile of embryos which at one point, the state will have no idea what to do with them. The only solution is to stop the freezing of embryos and try to encourage people to adopt the existing ones,” Sciberras said.

Sciberras said that it is easy for government to proceed with the passing of the law, but it should be in the government’s interest to pass a law where no one is left behind. She said that despite the government having power to pass the law, it should act with prudence as the ethical responsibility and whatever consequences come next will fall upon the same government.

Asked if the Foundation found any problems on the other proposals regarding the IVF law reform, Sciberras said that there are other details to discuss, however, the pre-implantation genetic testing remains the most crucial.