Disability commission supports introduction of embryo genetic testing

People who do not wish to pass on their genetic disorders to their children should have access to pre-implantation embryo genetic testing, the disability commission said.

Reacting a day after parliament started debating the introduction of genetic testing (PGT) as part of wide-ranging changes to the law regulating in-vitro fertilisation, the Commission for the Rights of Persons with Disability (CRPD) said it supported the move.

“It is only natural that pre-implantation genetic testing should be made available to those who do not want to pass on genetic disorders to their offspring,” the commission said.

On Wednesday, Health Minister Chris Fearne tabled in parliament a new protocol drawn up by the Embryo Protection Authority to regulate testing of embryos for monogenic disorders. The protocol lists nine conditions for which tests will be allowed but gives the authority leeway to introduce other conditions down the line.

CRPD said that the voice of people who know that they might pass on a genetic disorder, should they decide to procreate, has been conspicuously missing in the past few weeks.

“Unfortunately, public discourse was effectively hijacked by those whose only connection with the subject matter is purely academic, professional or moral,” the commission said.

It noted that the stigma surrounding their condition hinders these people from being as loud in voicing their concerns and aspirations without being “unjustly judged”.

“Maltese society has the moral duty to provide a safe space for these people to speak up, rather than be silenced. For they are the experts on account of their life experience, which was not gained by proxy,” the CRPD said.

It emphasised that according to the UN Convention for the Rights of Persons with Disability, persons whose full and effective participation in society on an equal basis with others is hindered by barriers placed by society on account of their long-term impairment are effectively disabled.

“People who live in perpetual fear of passing on a disorder that hinders meaningful and fulfilling life fall squarely within this definition. Their ability to enter intimate relations, procreating or founding a family is heavily impeded, both by the probability of passing on the disorder as well as the associated stigma,” the CRPD said.

The commission added that Malta is obliged by UN convention to provide health services needed by persons with disabilities specifically because of their disabilities, “including early identification and intervention, and services designed to minimise and prevent further disabilities, including among children and older persons”.

It noted that the proposed PGTM protocol includes a specific list of conditions where the quality of life is severely impacted, reference to genetic counselling services and that it is the choice of the prospective parent/s to decide on a voluntary basis on whether to engage with the test and proceed with the implantation of a diagnosed embryo.

“Having listened to realities of those who took the very painful decision of not having children due to their concern of passing on their genetic disorder, CRPD supports the proposed PGTM protocol,” the commission said.

The commission's sentiments were reflected by a pro-choice doctors' lobby group that said denying PGT to people with genetic disorders  was "discriminatory".

The Opposition has indicated in parliament that it will not support PGT although it agrees with other amendments to the IVF law.