Are we about to face the era of a ‘new eugenics’ movement or is it simply a return to the ‘old eugenics’ which we thought had disappeared shortly after the end of World War II? The health crisis may force us to decide who to prioritise and on what basis.
There is alarming news from the USA which raises the possibility that people with intellectual disabilities and developmental disabilities, including those with Down syndrome, cerebral palsy, autism and other such conditions will be denied access to lifesaving medical treatment as the COVID-19 outbreak spreads across that country.
In the preparation of a Position Statement by the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASIDD), colleagues and I have published a paper on the issue of ending the lives of people with intellectual and developmental disabilities on the basis of alleviating suffering and the prospective judgement of their having a poor quality of life.
This paper took its inspiration from the Convention on the Rights of Persons with Disabilities (CRPD) adopted by the United Nations in 2006. It joins disability advocates in their concern about how “the new eugenics” may effectively undermine CRPD’s mission. The overall goal of the paper was to support disability advocates in their struggle for social justice and equality, and to make this position publicly known.
We traced three distinct cases in the literature: ending the lives of severely disabled prematurely born infants, terminating pregnancies after positive outcomes of genetic screening and testing, and ending the lives of persons with intellectual and developmental disabilities by means of euthanasia.
Our position is that this is an example of a ‘new eugenics’ emerging and quite different from the former eugenics movement which resulted in forced sterilisations of women with intellectual disabilities in many countries and ultimately by Hitler’s pursuit of a ‘pure race’. These actions were based on the principle of protecting the gene pool from being polluted by people with ‘defective’ traits.
It might well be asked then why have we chosen to use the term ‘new eugenics’?
The reason is the similarity that objectively links the justiﬁcation for the kinds of acts that were prevalent in the late19th and 20th centuries with the ‘old eugenics’. In one way or another, it is based on the preconception of a life lived with intellectual and developmental disabilities as a life of “poor quality”; that is the cause of unbearable suffering for the persons and families involved. This preconception is disproven in too large a number of cases to be credible. People with these conditions rarely describe their own lives in negative terms. Even when they do, it is often because of the environmental responses of rejection they have to deal with.
However, in the context of the alarming increase in numbers of people seeking urgent health support having contracted COVID-19, the bio-ethical question of who can be offered scant resources is immediate. Here the question is not about prospective views of a person’s quality of life, but the moral question of who is more deserving of the limited resources available?
Disability advocacy groups strongly demand that a human rights approach should be forefront when bio-ethical decisions are being made.
Recently, the UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas, commented during the presentation of her 2020 report to the UN Human Rights Council: “Current developments in medical research and practice may revive eugenic ideas if safeguards for those affected are not ensured.”
It is significant that Catalina Devandas did not seek to make a distinction between the ‘old’ and ‘new’ eugenics, rather she saw it as a continuum, especially in the case of people with disabilities:
“Nazi eugenic practice was responsible for the murder of approximately 300,000 persons with disabilities who were considered having ‘lives unworthy of life’. Unlike the widespread moral revulsion and outrage against comparable atrocities of the twentieth century, the significance of the eugenics movement and its impact on how societies continue to dismiss the value of the lives of persons with disabilities has long remained confined to disability circles.”
As recently as 26 March 2020, a panel of UN human rights experts stated:
“Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government. The scarcity of resources or the use of public or private insurance schemes should never be a justification to discriminate against certain groups of patients. Everybody has the right to health. People with disabilities, older persons, minority communities, indigenous peoples, internally displaced people, people affected by extreme poverty and living in overcrowded settings, people who live in residential institutions, people in detention, homeless people, migrants and refugees, people who use drugs, LGBT and gender diverse persons – these and other groups need to receive support from governments.”
Catalina Devandas’ report also pointed out: “Historically, bioethics and disability have had a close but conflictual relationship. Despite a common interest in facilitating good medical care and individual choice, disability rights activists and bioethicists often differ considerably in their approaches. From a mainstream bioethical perspective, preventing or curing impairments is a morally good thing to do. Since disability is perceived as a deviation from a norm of health, restoring impaired bodies and minds to normal functioning and health, or ideally preventing such an occurrence, is valued positively.
However, from a disability rights perspective, 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.
Much of the work in bioethics to date has been based on a thin or inaccurate understanding of the diversity, complexity, and socially embedded nature of disability. While some bioethical writing on disability has begun to take into account the perspective of persons with disabilities, it is still overwhelmingly produced from the standpoint of outsiders. Ableist views, including the assumption that persons with disabilities are of lesser value than others, or that their lives are not worth living, dictate most bioethical discussions, from prenatal testing to assisted dying. They therefore fail to address the bioethical questions that actually concern persons with disabilities and their families.”
Disability advocates in Australia, and those in countries currently experiencing rapidly increasing deaths from COVID-19, are calling for the weak and marginalised members of our society not to be abandoned on the basis of their perceived lower moral status as human beings.
There is abundant evidence that people with disabilities, and those with intellectual and developmental disabilities in particular, already face significant complex health issues.
The Australian health system may face this challenge more quickly than we currently expect, especially if our health resources fail to match the expected exponential increase in demand.
Whom shall we prioritise and on what basis?
Trevor R Parmenter PhD, is Professor Emeritus, Sydney Medical School, former Foundation Chair of Developmental Disability and Director of the Centre for Developmental Disability Studies, University of Sydney, 1997-2009. He is a Past President of the International Association for the Scientific Study of Intellectual and Developmental Disabilities and continues to be active in research and teaching in the Asia/Pacific region.