Persons with disability have the right to fully informed and enabled access to family planning and reproductive health services of their choice, the Commission for the Rights of Persons with Disability has said in a statement reiterating its support for a proposed IVF law.
“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 CRPD 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.”
The proposed new IVF legislation will allow couples to test embryos for serious genetic conditions.
If the bill passes into law, prospective parents will be allowed to screen their embryos prior to implantation. It will be limited to prospective parents with a history of serious monogenic disorders, such as gangliosidosis, Huntington’s Disease and Finnish Nephrotic Syndrome.
Some, including the PN and the Malta Foundation of Organisations for Persons With Disabilities, have come out against the bill. However, the CRPD insisted that failing to do so would place barriers on people on account of their long-term impairment.
“People who live in perpetual fear of passing on a disorder that hinders a 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,” it said.
CRPD also noted that the 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 added that it is the choice of prospective parents to decide on a voluntary basis 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.”
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