The National Parents Society of Persons with Disability said today that sweeping statements made by the Commission for the Rights for Persons with Disabilities are reductionist and simplistic at best and dangerous at worst.
The NPSPD added its criticism to the position taken by the CRPD on genetic testing after this morning, members of the CPRD also disassociated themselves from the official position, saying they had not been consulted.
In its statement, the NPSPD said that since Pre-implantation Genetic Testing (PGD) was introduced in assisted reproductive technology in the early 2000s, it has become a routine method for examining and rooting out genetic disorders in embryos in various countries. In essence, this entails that before implantation in IVF procedures, embryos are tested for specific genetic mutations. Only embryos free of those disorders become eligible for transfer to the uterus with the possibility of being born. The list of traits it can be used for continues to grow as we speak, with most conditions being non-life-threatening.
Humans share a common desire to avoid suffering, and it is no surprise that the use of PGD, which seeks to eliminate the existence of suffering before it is experienced, has become increasingly popular. Sweeping statements in favour of PGD for all genetic conditions, though, such as that made by the Commission for the Rights for Persons with Disabilities (CRPD), are reductionist and simplistic at best and dangerous at worst. This is because the emergence of its use locally brings many ethical and social dilemmas related to disability that need to be recognised and discussed. For example, many disability activists and ethicists locally and internationally see PGD as nothing more than a tool for modern eugenics. Ultimately, this does entail selecting who should have a chance at life based on genetic makeup.
The direct results of using PGD are not only on the embryos who are never given the opportunity for life, but has a broader implication on the way society perceives such genetic mutations, leading to a disvaluing of the people living with such conditions. Assigning the label of defectiveness and the qualification to elimination for a genetic condition is rooted in objective medical indications and suggests that all cases of such a condition manifest equally clinically and are experienced in the same way. This does not consider or respect the diversity of the lived realities and experiences of persons with such conditions and their families. PGD also reinforces the paternalistic medical model of disability, where the healthcare professional makes decisions for a patient and sees disability as something to be simply cured, a model that many have been striving to reject in favour of a more social model which places importance on how society relates to disability.
Important questions need to be considered. With a language of abnormal and defective embryos, how will this affect perceptions and beliefs surrounding disabilities and influence parents’ decisions regarding testing and implantation? How informed are the decisions taken when a medical professional insists to parents that this is the right way to go?
The NPSPD said that a proper consultation process is needed involving activists, ethicists, patient groups and NGOs working in the disability sector. A sweeping statement in complete favour of PGD for all possible genetic mutations goes against the multiple voices of persons with disability and their parents. Taking into consideration the voices of all stakeholders and the various implacations of this technology will lead to a legislation with regulatory frameworks and safeguards that are more respectful of the value of human life and Article 10 of the UN Convention stating that "every human being has the inherent right to life".