Disability-selective antenatal screening programmes have been attracting the attention of disability advocates worldwide. And rightly so, as we witness on a global scale programmes that target the Down syndrome community for birth prevention. These programmes reinforce attitudes of discrimination towards our community based on a view that these lives are off less worth than others or some kind of disadvantage. They are in direct conflict with the basic freedoms and rights of people with Down syndrome and other disabilities.
A disability rights framework casts serious doubts over the intention, biases and consequences of such screening programmes according to a modern social understanding of disability that is underpinned by the principle of the dignity of all human life.
In 2006 the United Nations adopted the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD formally introduces a disability narrative into the wider human rights framework. The basic principles of the CRPD are respect for human difference, non-discrimination, inclusion and participation. These are all directly relevant to antenatal screening programmes, as they impact on whether persons with disabilities are born and influence attitudes towards these people and their families.
It is with the CRPD principles in mind that Saving Downs and the Spina Bifida Association of New Zealand met with the Chief Commissioner of the New Zealand Human Rights Commission (HRC) in October 2011. We meet the Commissioner to discuss our concerns relating to the practice of antenatal screening in New Zealand and the impacts on the Down syndrome and Spina Bifida communities. At that meeting the Commissioner agreed to formally receive our detailed submission on the application of the CRPD in relation to antenatal screening for disability.
Seven organisations resolved to formally support that submission including Down Syndrome International and the New Zealand Down Syndrome Association. The group submission requested the HRC to develope an action plan where there are areas of conflict between the screening programme and the CRPD. The HRC have now reviewed the submission and are currently developing a work plan around bio-ethical issues and disability that will incorporate this work. A formal response from the HRC is expected this month.
This is the first initiative of its kind in the world and is likely to have widespread positive implications internationally for those countries that have ratified the CRPD.
International disability rights expert Janet E. Lord has recently published an extensive paper on the application of the CRPD in relation to disability screening programmes. Her qualifications in this field are impeccable. Ms. Lord participated in all of the drafting of the CRPD, serving as advisor to lead governments, expert to the United Nations and legal advisor to Disabled Peoples International. She is a leading expert on the CRPD, publishing widely in the field and designing and implementing disability law and policy reform in more than 30 countries worldwide.
Ms. Lord’s paper is worth reading in detail for those wishing to pursue concerns around disability screening from a disability rights perspective. The following are extracts of the more pertinent aspects of her paper. The full paper also includes a case study of the New Zealand situation and the work of Saving Downs and the Spina Bifida Association of New Zealand who are leading the international arena in this field, so it is worth reading for that alone.
Extracts from “Screened Out of Existence: The Convention on the Rights of Persons with Disabilities and Selective Screening Policies” by Janet E. Lord.
A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening.
The historical disadvantage of persons with disabilities has been shaped, reinforced and perpetuated by the idea that disabling conditions represent abnormality and pathological defect. Invidious stereotyping continues to exclude and isolate persons with disabilities who have not generally been accorded the full or equal enjoyment of human rights that international law demands.
The CRPD supports the accommodation of impairment as a natural feature of human diversity. It includes among its general principles respect for human difference, along with non-discrimination, inclusion and participation, all of which are salient features of a disability analysis applicable to law, policy and programming, including prenatal screening programs that may impact whether persons with disabilities are born.
Against these developments, disability advocacy organizations and the body that monitors CRPD implementation – the Committee on the Rights of Persons with Disabilities – are starting to turn their attention to the impact of disability selective screening policies on persons with disabilities and their families, much as sex-selective screening and abortion has triggered concerns – and conflict – among human rights advocates. Some commentators assert that disability-specific screening policies impart the harmful the message that persons with disabling conditions are unwelcome in society.
Moreover, screening for immutable disability characteristics such as Down syndrome – where there is no potential therapeutic value – reinforces internalized oppression according to which disabled persons are devalued, tagged with their impairments and branded as a burden (Newell, 1999; Houghton, 1994; Davis, 1987). Others suggest that the way such screening protocols are implemented in practice has a major impact on birthrates of certain groups of persons with disabilities, ultimately raising serious ethical questions about what kinds of people should be born. Screening policies as practiced also raise human rights concerns regarding the rights of would-be parents who are, arguably, protected against disability discrimination under the CRPD, along with other rights, including the right to information and free and informed consent to medical procedures.
A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening along with embryo selection, and its implications for core principles of disability human rights such as respect for difference and non-discrimination on the basis of disability.
Devaluation of Lives through Quality of Life Assessments
Traditional quality of life assessments are at the heart of disability-selective antenatal screening policies as designed and practiced in contemporary medicine (Asch, 2003). They embrace a decidedly medical model perspective that is at odds with a social model understanding of disability and a rights-based approach rooted in principles of dignity, non-discrimination, participation and respect for difference:
Some doctors hold a narrow, medically-aligned view that people with Spina Bifida and Hydrocephalus have a very poor quality of life which may not be worth living. There are many medical problems related to Spina Bifida and Hydrocephalus, but quality of life is not only a medical matter. It is difficult for doctors to accurately assess the severity of disability even if they are specialists in the condition. Those best qualified to judge are people with Spina Bifida and Hydrocephalus and the parents of those children who are convinced that their lives are definitely worthwhile (Belcher, 2012).
By contrast, the social model, rights-oriented perspective informs contemporary disability policy and is meant to drive decision-making, including health policies, as reflected in the international disability rights framework of the CRPD.
Situating Screening within a Social Model Understanding of Disability
Many health policies (and indeed other types of policies) operate on the assumption that disabling conditions are pathological and defective and not, as a social model, rights-based understanding explains, a socially ascribed deficit. The resulting impact of such a perspective is clear; as underscored by a disability rights narrative, persons with disabilities are to be avoided and/or excluded, as opposed to accommodated and included in the community. Societal responses to disability must comport with, qua disability rights principles, accommodation, inclusion and support. Health policies, as such, are required to pitch toward these principles and not, as in the case of disability-specific antenatal screening programs, invariably toward termination and exclusion (Asch, 2003; Biesecker & Hamby, 2000). A disability rights analysis, holds that antenatal screening protocols, along with other health policies, must be informed by and reflective of a social model understanding of disability.
The received disability studies critique holds that the indirect discursive effects of targeted screening programs inevitably convey the devaluation of the lives of persons with disabilities (Asch, 2003). Advocates are particularly critical of screening for immutable disability characteristics such as Down syndrome that have no potential therapeutic value or curative possibility. They argue that such screenings thus only serve to reinforce the idea among persons with disabilities themselves that they are tagged with their impairments and thereby branded as a burden, whether on their families or the public purse, with no value attributed to their role in the community. By implication, the clear signal sent across the disability community on the adoption of such policies is that persons with disabilities are, wherever possible, to be screened out, their existence avoided altogether.