Concerns over expanded list of genetic testing in IVF procedures
'An inclusive society is measured not by how effectively it prevents disability, but by how fully it values, respects and includes persons with disabilities'
The Malta Federation of Organisations of Persons with Disability (MFOPD) has expressed 'deep concern' over the government's decision to further expand the list of genetic conditions for which embryos may be tested against during IVF procedures.
"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?" the federation asked.
"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)."
It noted that in terms of UN conventions, all persons are equal in dignity and rights and states have a duty 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."
The federation said disability-based embryo selection raises serious human rights questions. The United Nations Committee on the Rights of Persons with Disabilities had itself highlighted concerns about laws and policies that distinguish between human lives on the basis of disability and had stressed the importance of ensuring that disability is never treated as a reason for diminished human value.
"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," the federation said.
It called on 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," it insisted.