Preimplantation genetic testing: the conflict between reproductive autonomy and disability rights. With the UK, Ireland, and Portugal as case studies

Abstract

Preimplantation Genetic Testing allows parents who are at risk of passing on a serious genetic disability or illness to avoid implanting embryos with genetic abnormalities, when going through IVF. In the UK and Portugal, this is publicly funded and limited to ‘serious’ genetic abnormalities only, whereas in Ireland there are no national regulations. At first glance, selecting against genetic abnormalities is a justifiable aim in the name of public health and avoidance of human suffering. In addition to this, reproductive autonomy is an important bioethical principle and control over one’s private and family life is commonly recognised as essential for human flourishing within a liberal society. However, if we do not remember our history we may be doomed to repeat it. Objectively harmful eugenic policies of the 20th century advocated for the eradication of disability in order to improve the strength of humankind. This traumatic history continues to create fear amongst the disability community for the return of stigmatisation, discrimination and reduced funding for services. However, the reality is that raising a child with a disability correlates with economic, social and mental strains. Should we therefore set limits on an individual’s ability to avoid these strains, in order to protect human diversity and the rights of persons with disabilities? If we truly respect reproductive autonomy and the value of disability in our communities then why is it considered immoral to deliberately select an embryo with the gene for deafness? Whilst the majority of disability is attributed to non-genetic factors and therefore the eradication of disability is impossible, grave damage can still be done to our tolerance for human variation and the inherent human dignity regardless of one’s genetic constitution.