The Thalidomide Survivors Association (TSA) in Malta is calling for the pre-implantation genetic testing of embryos created via IVF to be paused until a "transparent ethical and disability rights review" can be carried out. The group, along with the Malta Federation of Organisations for Persons with Disability (MFOPD), is arguing that such testing is discriminatory.

Key Takeaways:

• The Thalidomide Survivors Association and the Malta Federation of Organizations for Persons with Disability are asking for a pause on pre-implantation genetic testing of embryos, which they view as discriminatory.

• “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 groups noted.

• The groups have a list of six requests they are seeking to have met before any expansion of testing is authorized. In 2022, PGT was allowed to test for nine conditions; now, 17 more conditions are set to be screened in addition to the first nine.

The Backstory:

Thalidomide is a prescription medication created in the 1950s for use as a sedative and an anti-nausea drug. It was prescribed to pregnant women to help with morning sickness, but it caused significant birth defects in thousands of babies, including missing or shortened arms and legs, along with internal health issues. It was banned in the 1960s but is used today to treat multiple myeloma and leprosy.

TSA seeks to "empower members and to improve their quality of life." According to its website, it aims "[t]o consolidate the community's sense of solidarity and social wellbeing through the love of Education, Research and Arts."

Pre-implantation genetic testing (PGT) of embryos created via IVF first began in the early 1990s with the successful testing for single-gene conditions such as adrenoleukodystrophy and cystic fibrosis.

It has become a fertility industry standard to test embryos for certain health conditions to avoid transferring, becoming pregnant with, and birthing babies with such conditions. Disability rights advocates have called PGT discriminatory because it is used to seek out certain human beings to eliminate them, not help them.

PGT first began in Malta in 2022 despite opposition from the Catholic Church and the Nationalist Party, and it originally allowed for testing for nine health conditions.

Now, 17 more conditions are being added to the list.

The Details:

TSA has spoken out against the change.

“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,” TSA said. It added, “Our concern is with public policy and the message conveyed when avoiding disability is presented as an unquestioned measure of progress. 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.”

Marthese Mugliette, president of the MFOPD, told MaltaToday:

"MFOPD believes that widening the list of conditions for embryo genetic testing may imply that disabilities should be avoided, which could make people with disabilities feel less accepted and valued in society.

MFOPD believes that every person, with or without a disability, has equal dignity and value."

She didn't back away from reality, however, stating, "MFOPD recognises that families may face significant emotional, financial and practical challenges" and argued that "these concerns should be addressed by ensuring access to quality healthcare, disability support services, financial assistance and inclusive community services, so that families are supported and no one feels they are facing these challenges alone."

TSA pointed to Article 10 of the UN Convention on the Rights of Persons with Disabilities, which it said affirms the inherent right to life and equality of individuals with disabilities. This, it argues, should be considered as PGT carries "the human-rights implications of state-supported selection based on disability-related characteristics."

What's Happening Now:

The groups are asking the government to:

pause the expansion of PGT-M pending a transparent ethical and disability-rights review

publish the full list of conditions and the criteria used to approve them

consult disabled persons’ organisations, disability-studies academics, families, clinicians and bioethicists

ensure balanced, non-directive counselling that includes lived experience and information about available support

strengthen healthcare, community services, personal assistance and financial support;....

review the governance and independence of the Commission for the Rights of Persons with Disability

Nikita Alamango, president of Nisa Laburisti, the women’s wing of the Labour Party, is in favor of the expansion and told MaltaToday, "Hundreds of genetic conditions can now be identified internationally, yet Maltese couples continue to have access to only a limited number. If we genuinely believe in reproductive healthcare, then our legislation must evolve alongside science."

Those in favor of PGT see the 'evolution of science' as the ability to eradicate certain people. TSA and MFOPD, however, recognize the inherent right to life and value of every human being regardless of the results of a screening test when they are in their most vulnerable form of development.

The Bottom Line:

Using IVF to eliminate certain embryos and ensure that only those deemed "healthy" are allowed to be born turns the IVF process into a seek-and-destroy eugenic mission rather than an attempt to overcome infertility.