Dissenting members disagree with pro-PGT stance of national disability rights commission

The members of a council within the national disability rights agency CRPD, have disassociated themselves from the agency’s stand in favour of preimplantation genetic testing for embryos at risk of monogenetic and hereditary disease.

The council members, which include representatives from the Malta Federation of Organisations for People with a Disability, and the Catholic home for the disabled Dar tal-Providenza, said the CRPD’s stand had not been discussed with council members.

The Commission for the Rights of People with a Disability declared this week that people who do not wish to pass on their genetic disorders to their children should have access to pre-implantation embryo genetic testing.

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 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.

But the dissenting Council members have disagreed with the position, saying it undermined all the efforts of the disabled people’s movement in Malta in the past few decades to introduce the social model of disability which places the responsibility of disablement also on the barriers found in society and the environment,” the council members said,

“We are reverting to the medical model of disability, which only considers the biological impairment of a person with disability thus putting the responsibility solely on the individual.”

The members said that discarding embryos with genetic impairments assumed the life of someone with an impairment was not worth living. “Who is to tell, or indeed predict, what one’s life will be like at that stage? The emphasis here is only on the ‘burden’ or the ‘suffering’ of a person who has an impairment. How can prospective parents make an informed choice if they are only presented with the negative consequences of an impairment? Indeed, there is much more to the life of a person who has a disability.”

The members signing the statement are Maryrose Attard, Lourdes Farrugia, Carmen Grech, Dr Maria Victoria Gauci, Marchita Mangiafico, Fr Martin Micallef, Carmen Muscat, Marthese Mugliette, Rita Vella, Loran Xuereb, and Amy Camilleri Zahra.

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