Doctors on PGD: 'Speak to couples: their main concern is their children's lives'

Ethical debates on PGD testing tend to be squared around the respect for life and the integrity of selecting human beings at their conception, a process that mandates discarding embryos that are unwanted.

Earlier this week, pro-life lobby Doctors for Life denounced PGD testing as a pathway to a eugenic process that “only eliminates illness by eliminating the ill”, and said that it would be used to give the healthy a chance at life, while condemning the sick to be destroyed.

But the group even claimed that sufferers of such genetic conditions often selected for PGD, such as cystic fibrosis, could look forward to a life expectancy approaching 50. “We must bear in mind that certain genetic conditions, such as cystic fibrosis, had an abysmal prognosis up until a few years ago; they have now become far more treatable with life expectancy approaching 50 years.”

Making a case for PGD testing to be introduced, pro-choice doctor Isabel Stabile argued that genetic disorders, especially in their severe forms, can have a devastating impact on an individual’s quality of life and life expectancy.

“If you speak to couples who wish to make use of PGD, either because they are carriers, or are mildly affected, or have the major form of the disorder, their main concern and motivation is always the quality of life of their children,” Prof. Stabile said.

Prof. Stabile pointed out that they do not want their children to suffer, possibly in the same way their parents suffered from the disease in their life. “Preventing genetic disorders through PGD does not mean that the lives of people with disability are not valued. Quite the opposite, PGD empowers people who have genetic disorders to reproduce safely, with the knowledge that their child will almost certainly not be affected by the disorder.”

She said denying people with genetic disorders access to PGD was an act of disempowerment and discrimination.

However, a spokesperson for Doctors for Life (DFL) said it endorsed the scientific truth that human life starts at fertilisation and that once it has begun, it should always be treated with dignity and care, irrespective of the stage of development. “Embryos are human lives at a very early stage of development,” the NGO said.

Discarding embryos

Maltese law bans the discarding of embryos, and persons may not start another round of IVF until all fertilised embryos are used.

Prof. Stabile said the reality of PGD testing was that affected genes are not implanted with the knowledge they would undoubtedly produce a child affected by the disease. “This inevitably means that certain embryos would have to be discarded, but it has to be pointed out that this is not the same as an abortion.”

Prof. Stabile reiterated that abortion and the discarding of embryos should not be seen as the same. “Abortion is the termination of pregnancy. In contrast, here we are talking about very early embryos, consisting of a few cells that are still outside of the woman’s body, and there is no pregnancy at this stage. It is also a fact that the vast majority of embryos fail to implant in the uterus and die naturally. As to whether embryos could be donated to science, this should be a decision taken between the clinician and the couple involved.”

Prof. Stabile also said embryos “are not children”, and discarding an embryo with a severe genetic disorder should not be equated with an abortion.

“Having PGD testing available does not necessarily mean that parents undergoing IVF must avail themselves of it. It means they will have a choice, one that women in other European countries in their situation have.”