By Michael Cook
A United Nations official has slammed “liberal eugenics”. In her report to the Human Rights Council on people with disabilities, special rapporteur Catalina Devandas-Aguilar, denounces “ableism” in healthcare and assisted dying.
Ms Devandas is a Costa Rican lawyer, married with three children, who has spinal bifida. Her annual report has been overlooked because of the sudden emergence of the coronavirus pandemic. Surprisingly for a UN document, it takes a dim view of progressive bioethics. Here are some of her observations.
What is disability? “Disability is part of the continuum of the human experience. The question is not about preventing or curing impairments, but how to ensure that all persons with disabilities enjoy the same rights and opportunities as everybody else.”
Liberal eugenics: “When discussing issues such as prenatal testing, selective abortion and pre-implantation genetic diagnosis, there is a shared concern among disability rights activists that bioethical analyses are often used to give an ethical justification to a new form of eugenics, often referred to as consumer-driven eugenics.
“Liberal eugenics aims to expand reproductive choices for individuals, including the possibility of genetic enhancement. While there may be no State-sponsored coercive eugenics programmes, in a context of widespread prejudice and discrimination against persons with disabilities, the aggregate effect of many individual choices are likely to produce eugenic outcomes.
“Indeed, ableist social norms and market pressures make it imperative to have the ‘best possible child’ with the best possible chances at life. Some utilitarian bioethicists have further argued that genetic enhancement is a moral obligation and that it is ethical to give parents the option to euthanize their newborns with disabilities.”
Abortion for birth defects: “Such practices may reinforce and socially validate the message that persons with disabilities ought not to have been born. Legislative frameworks that extend the time frame for a lawful abortion or, exceptionally, permit abortion in the presence of fetal impairment aggravate this message.
“In addition, as the consequence is a smaller number of persons with disabilities being born, some fear a reduction in disability advocacy and social support for persons with disabilities. Furthermore, health policies and abortion laws that perpetuate deep-rooted stereotypes and stigma against persons with disabilities also undermine women’s reproductive autonomy and choice.”
Euthanasia and assisted suicide: “From a disability rights perspective, there is a grave concern that legalizing euthanasia and assisted suicide could put at risk the lives of persons with disabilities. If assisted dying is made available for all persons with a health condition or impairment, regardless of whether they are terminally ill or not, a social assumption might follow that it is better to be dead than to live with a disability.”
Futile treatment: “it has been reported that physicians may exert pressure on critically ill patients and their families to withhold or withdraw life-sustaining treatment based on the belief that further treatment would be futile, non-beneficial or potentially inappropriate, particularly for patients with severe impairments.
“That subjective assessment, based on the physician’s opinion and values, includes an assumption on the resulting quality of life of the individual and thus involves a risk that it is influenced by ableist views of living with a disability. Similarly, cost-effectiveness considerations may also result in the denial of life-sustaining treatments to some persons with disabilities.