The Commission for the Rights of Persons with Disability (CRPD) in a statement reiterated the right of persons with disability to be fully informed and enabled to access family planning and reproductive health services of their choice, as provided for by Article 23 of the UN Convention for the Rights of Persons with Disability (UNCRPD).

“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.

“The gargantuan stigma surrounding their condition hinders them from being as loud in voicing their concerns and aspirations without being unjustly judged. Especially in these circumstances, 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,” it continued.

The Commission noted that according to the UNCRPD, 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 are heavily impeded, both by the probability of passing on the disorder as well as by the associated stigma,” the Commission said.

It noted that Article 25 of UNCRPD obliges Malta to “provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons.” 

“It is therefore 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.

“Thus, considering that the proposed PGTM protocol includes a specific list of conditions where the quality of life is severely impacted, reference to genetic counselling services (before, during and after the testing and procedure), 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 an diagnosed embryo; and 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,” it added.

The Parliamentary debate on the legal amendments kicked off on Wednesday, with Prime Minister Robert Abela insisting that the discussion on the matter should be based on facts and that politicians cannot remain indifferent before the suffering of children and families.