Antenatal screening, disability rights and the CRPD

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.

Introduction

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.

 

 

The CRPD Normative Framework

At the outset, it bears mentioning that the CRPD reaffirms the right to life (CRPD, 2006, art. 10), widely recognized as a core principle of human rights law (Committee on the Rights of the Child, general Comment 5, 2003). The provision is a particularly sparse one, and, as such, is essentially stripped of any contextual elements that would link the right to the particular situation of persons with disabilities (CRPD, art. 10). It avoids mention of issue areas raised during the course of the negotiations, such as disability-based abortion or physician assisted suicide, and instead adopt language in alignment with previously-agreed upon language. Accordingly, Article 10 of the CRPD neither settles nor resolves any questions surrounding the permissibility of publicly funded disability-selective antenatal screening programs. Beyond this provision, then, the CRPD provides a detailed framework within which to analyze disability screening policy and practice.

 

 

Dignity

The reference to “respect for inherent dignity” in Article 3 of the CRPD echoes the preamble to the Universal Declaration of Human Rights which emphasizes that “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice, and peace in the world”

Respect for dignity is denied when persons with disabilities are devalued and discounted, including when they are barred from meaningful consultation in decision-making that affects their interests. Dignitarian interests are also at stake when health policies – such as disability-selective antenatal screening policies – characterize, whether explicitly or implicitly, disabling conditions, such as Down syndrome, as burdensome, lacking in quality and the like.

Participation in decision-making

The principle of participation and inclusion – an expression of due process wherein persons whose interests are most affected are entitled to a voice in decision-making processes concerning those interests – is a fundamental principle of human rights law and is articulated in the CRPD as a general principle and obligation in Article 4(3)

The implications of the right to participate in decision-making along with recognition of legal capacity for antenatal screening policies is clear – persons with disabilities are to be accorded recognition as persons with legal capacity and, hence, the attendant right to participate in decision-making, whether in relation to large life decisions such as where and with whom to live or other decision-making processes. Where support is needed to facilitate the exercise of legal capacity, including participating in decision-making processes, it must be provided (CRPD, 2006, art. 12). Antenatal screening that ultimately impacts the number of children born with Down syndrome, as well as other disabling conditions such as Spina Bifida must, accordingly, include the participation of such persons whose interests are acutely impacted by the adoption of such policies. Studies clearly demonstrate that such screening policies invariably, as applied in practice, have an impact on the population of persons with disabilities.

 

Respect for difference

The principle of “respect for difference and acceptance of persons with disabilities as part of human diversity and humanity” is set forth in Article 3 of the CRPD and expresses the values that underpin the CRPD and human rights law more generally (CRPD, 2006, art. 3). This principle acknowledges, for example, a basic idea of human rights law that individuals are active subjects of human rights, as opposed to objects to be acted upon. Moreover, in recognizing disability as a natural incident of human diversity and in underscoring respect and indeed acceptance – as opposed to a lower threshold of tolerance – of difference, the provision serves as an affront to conceptualizations of disability that are grounded in outmoded models conveying paternalism, pity, charity and the like.

Health policies, including disability-selective antenatal screening policies, must, accordingly, align with the principle of respect for difference. Such a policy could in theory conform with this principle if, for example, it was directed at promoting safe birth outcomes. Policies that explicitly or implicitly pitch towards disability-selective abortion on the basis of disability are, however, decidedly at odds with this principle and the fundamental purpose of the CRPD which is to promote respect for persons with disabilities (and their families).

 

Equality and Non-discrimination

A principal argument put forward by opponents of prenatal screening as currently practiced is that screening policies targeting a specific population of persons with disabilities, such as persons with Down syndrome or spinal bifida, offend the principle of non-discrimination (Savings Downs). CRPD non-discrimination and equality provisions are elaborated in Article 5, which requires States Parties to ensure the equality of individuals with disabilities, and prohibits any discrimination on the basis of disability.

The CRPD defines disability discrimination as “any distinction, exclusion or restriction on the basis of disability” that “has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms” and it extends to “all forms of discrimination, including denial of reasonable accommodation”.

A disability-selective antenatal screening policy that has the purpose or effect of birth prevention of a protected minority group, raises the specter of discrimination at least insofar as it impacts the social (and other rights) of the protected group.

The Committee on the Rights of Persons with Disabilities, in one of its first concluding observations on a state report, signaled its understanding of the corresponding practice of disability-selective screening and abortion. It observed that Spanish legislation, Act2/2010 of 3 March 2010, on sexual and reproductive health decriminalizing voluntary termination of pregnancy nonetheless incorporates a problematic distinction according to which pregnancy may be terminated beyond the regular 14 week threshold to 22 weeks provided there is a “risk of serious anomalies in the foetus” “if the foetus has a disability” and, beyond week 22 in case of “an extremely serious and incurable illness” detected in the foetus (CRPD Committee, Concluding Observations, Spain, para. 17). In its concluding observations, the CRPD Committee recommended that Spain “abolish the distinction made in the Act 2/2010 in the period allowed under law within which a pregnancy can be terminated based solely on disability” (CRPD Committee, Concluding Observations, Spain, para. 18). In this regard the Committee signaled its implicit linkage between disability discrimination and the termination policy in Spain.

 

Access to health care

Article 25 requires that individuals with disabilities have access to “the highest attainable standard of health without discrimination on the basis of disability” by ensuring their equal right to “the same range, quality and standard of free or affordable health care” and related services provided to the non-disabled general population.

States fail to respect, protect and fulfill human rights if they support or acquiesce in policies that reinforce harmful stereotypes about persons with disabilities grounded in widely discredited assertions about quality of life. The CRPD Committee, in its reporting guidelines, calls on States to report on “the measures they have taken to raise awareness of persons with disabilities, to foster respect for their rights and dignity, their capabilities and contributions, and to combat stereotypes, and prejudices against them” (CRPD Committee Reporting Guidelines). The observation by commentators that sex selection leads to invasive medical interventions in the absence of therapeutic indications and contributes to gender stereotypes that could result in child neglect of the lesser-desired sex (Nachigall, 2010) is resonant with concerns by the disability community that disability-selective screening poses risks for the kind of stereotyping that the CRPD aims to combat.

Access to information

State Parties are required to take all appropriate measures to ensure that individuals – including prospective parents – are able to find, receive and impart information on an equal basis with others (CRPD, 2006, art. 21). The right to information in the health care context requires that such information be available, accessible, acceptable and of good quality

This right must be implemented consistent with human rights principles, including the respect for difference and diversity and in keeping with the social model understanding of disability. Under this analysis, disability-selective screening policies must, insofar as they impart information to prospective parents, conform to the general principles of human rights, including respect for dignity (including the dignity of individuals living with Down syndrome and their families).

Within the context of disability-selective antenatal screening policies, assistance to prospective parents must be consistent with the CRPD, including its principles, and must be reflective of the social model perspective of disability. Instead, the practice suggests that counseling tends to promote outmoded ideas about disability through language likely to inspire damaging and stereotypical fear-mongering among vulnerable prospective parents. It does not meet the standard of appropriateness required in the context of health care and, tellingly, barely grazes the topic of assistance to prospective parents facing the possibility of having a child with a disability.

Conclusion

Human rights law has, at long last, evolved in its conceptualization of disability. The human rights narrative now views disability not as medical pathology but as a human rights matter impacting a substantial and highly marginalized population. The introduction of a disability rights narrative into the human rights framework inevitably produces certain tensions that force us to confront possible disjuncture between the received obligations and the application of a reconfigured human rights analysis consistent with disability rights. One of the points of analysis contemplated by the CRPD is a review of health-related policies, the socio-contextual conditions within they are applied, and the resulting impact of such policies. The CRPD thus compels an analysis of antenatal screening and the extent to which such policies accommodate impairment as an accepted incident of human diversity and evoke respect for human difference, along with non-discrimination, inclusion and participation. Along these points of analysis, screening policies as practiced in modern medicine inevitably fail on numerous grounds. Reproductive rights are affirmed in the CRPD and the issue of reproductive choice is to be respected. This applies also to women with disabilities who so often are subjected to coercive decision-making in reproductive decision-making. As implemented in practice, however, screening policies, fall afoul of CRPD principles.