Thalidomide survivors' group says embryo screening plan risks devaluing disability

The Thalidomide Survivors Association Malta (TSA) has called out the government’s expansion of Pre-implantation Genetic Testing for Monogenic Disorders (PGT-M) to 17 additional conditions, warning that the move risks devaluing disability.

“Medical advancement must be consistent with the dignity and human rights of persons with disability. Disability must not be framed as a life to be avoided,” the Association said, adding that without safeguards, balanced counselling and meaningful participation by disabled persons, such policies may reinforce the perception that lives affected by disability are less valuable or more burdensome.

This comes after MaltaToday reported last week that the Malta Federation of Organisations for Persons with Disability (MFOPD) president Marthese Mugliette warned that widening the list of conditions screened during IVF could make disabled people feel less accepted and valued in society.

TSA shared Federation's concerns, recognising PGT-M as voluntary and acknowledging parents' difficult choices. Its concern was with public policy and the message that avoiding disability signifies progress.

State-supported embryo selection risks normalising the idea that preventing the birth of people with impairments is preferable to removing barriers faced by disabled persons in achieving equality, autonomy, and dignity.

The Association pointed to the United Nations Convention on the Rights of Persons with Disability, which requires states to respect inherent dignity, recognise disability as part of human diversity, combat stereotypes and involve persons with disability in decisions affecting them.

Article 10 of the Convention, it noted, also reaffirms the inherent right to life and its equal enjoyment by persons with disability. TSA said it did not claim that every use of PGT-M automatically breached Article 10, but maintained that the human-rights implications of state-supported selection based on disability-related characteristics must be properly assessed.

Drawing on Malta’s own history, TSA recalled that thalidomide was withdrawn internationally in 1961 after its devastating effects became known, yet it remained available in Malta until 1968. Maltese survivors then lived for decades without adequate recognition, support or compensation.

Recent acknowledgement and aid were welcome but came after years of hardship and neglect. The Association noted that the €3 million in compensation hasn't been fully paid to the remaining survivors. This history, it said, showed why medical policy must never be treated as purely technical, and must instead be accompanied by transparency, accountability, ethical scrutiny and respect for lived experience.

TSA also argued that much of the disadvantage experienced by persons with disability arises from inaccessible infrastructure, fragmented healthcare, inadequate personal assistance, limited specialised treatment, financial insecurity and discriminatory attitudes, rather than from impairment itself.

Disability, it said, is not simply located within an individual body but is produced and intensified by social and environmental barriers, and policies focused on identifying embryos associated with particular conditions may divert attention from the state’s duty to remove those barriers and provide lifelong support.

The Association said it was concerned by the absence, to date, of a clear public position from the Commission for the Rights of Persons with Disability, arguing that an institution established to safeguard disability rights should take an active and independent role in the debate.

It added that the recent inclusion of disability as a protected characteristic within Malta’s constitutional fundamental-rights framework must have practical meaning, and should guide policies that classify human characteristics according to health, ability or perceived quality of life.

Families, it said, should never be made to feel that raising a disabled child is impossible because essential services and financial support are inadequate, and genuine reproductive choice requires both access to testing and a properly funded choice to welcome and support a child with a disability.

TSA urges the government to pause PGT-M expansion until an ethical and disability rights review is complete. They call for publishing the approved conditions and criteria and consulting disabled groups, families, clinicians, and bioethicists. They emphasise providing balanced, non-directive counselling that incorporates lived experience and supportive information.

TSA also recommends improving healthcare, community services, personal assistance, financial aid, and reviewing the governance of the Commission for the Rights of Persons with Disability.

“Decisions of this magnitude must be guided by respect for life, equality, inclusion and human dignity,” the Association said. “True progress is measured not by how many conditions can be screened out, but by how fully society supports every person to live with dignity.”