The Malta Federation of Organisations of Persons with Disability (MFOPD) has expressed ”deep concern” the Government’s proposal to further expand the list of genetic conditions for which embryos may be selected against during IVF procedures.
MFOPD said that it ”wishes to make it clear that this statement is not directed at individuals or families who undergo IVF treatment or who face deeply personal and often difficult reproductive decisions. Nor is it a statement against medical progress. Rather, it is a statement about the values that public policy promotes and the message it sends about disability.”
As the national voice of organisations representing persons with disabilities, MFOPD said it has a duty to speak whenever legislation risks undermining the equal dignity and worth of persons with disabilities.
The Federation said that every time the law expands the list of disabilities for which embryos may be selected against, it inevitably raises a fundamental question: ”what message does society send about people who are living with those same conditions?”
It noted that ”for many persons with disabilities and their families, the message is difficult to ignore. It suggests that disability is a characteristic that society should seek to avoid and that lives affected by disability are less welcome than others. This is a message that stands in stark contrast to the principles that Malta has committed itself to uphold under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).”
The Federation highlighted the fact that the UNCRPD is founded on the recognition that all persons are equal in dignity and rights. It requires States to combat prejudice, challenge stereotypes and promote respect for persons with disabilities as an integral part of human diversity. Public policies should reinforce these principles, not weaken them.
MFOPD said it has ”consistently expressed concern that disability-based embryo selection raises serious human rights questions. The United Nations Committee on the Rights of Persons with Disabilities has itself highlighted concerns about laws and policies that distinguish between human lives on the basis of disability and has stressed the importance of ensuring that disability is never treated as a reason for diminished human value.”
The Federation said that ”while the expansion of the number of genetic conditions for which embryos may be excluded may be presented as a scientific or medical development, it also carries an important social and ethical dimension. As the categories of disability deemed suitable for selection continue to grow, so too does the risk of reinforcing the harmful perception that disability is something to be prevented rather than a natural part of human diversity deserving of equal respect and protection.”
It added that ”for decades, Malta has worked to build a more inclusive society – one that recognises persons with disabilities as equal citizens with equal rights, equal opportunities and equal dignity. These achievements should not be undermined by legislation that risks sending the opposite message.”
MFOPD therefore called upon the Government to engage in meaningful consultation with organisations of persons with disabilities before proceeding with the expansion of PGT-M testing in IVF.
”Decisions that have profound implications for disability rights should not be taken without the participation of those whose rights and dignity are directly affected. An inclusive society is measured not by how effectively it prevents disability, but by how fully it values, respects and includes persons with disabilities,” it said.
”Every human life has equal dignity. That principle must remain at the heart of our laws and our society.”
MFOPD also expressed its disappointment that organisations representing persons with disabilities ”were not meaningfully consulted before the announcement of the proposed expansion of the list of genetic conditions. Article 4(3) of the United Nations Convention on the Rights of Persons with Disabilities obliges States Parties to closely consult with and actively involve persons with disabilities, through their representative organisations, in the development of legislation and policies affecting them.”
It insisted that ”legislation that directly concerns disability and has profound implications for how disability is perceived in society should not be developed without hearing the voices of the disability community. Meaningful consultation is not merely good practice – it is a human rights obligation and a cornerstone of the UNCRPD.”
MFOPD said it remains committed to constructive dialogue with Government and all stakeholders. We believe that scientific advancement, support for families, and the protection of human rights are not mutually exclusive. ”Malta can continue to advance reproductive medicine while remaining faithful to the principles of equality, inclusion and respect for the inherent dignity of every human being.”
MFOPD therefore called on Government to ”suspend the proposed expansion of the list of genetic conditions pending genuine consultation with organisations of persons with disabilities and a careful assessment of the proposal’s compatibility with Malta’s obligations under the UN Convention on the Rights of Persons with Disabilities.”
The Federation concluded by saying that ”a society that truly values inclusion does not measure human worth by genetic characteristics or disability. It recognises that every person, regardless of disability, possesses equal dignity, equal value and equal human rights.”
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