Screened Out of Existence: The Convention on the Rights of Persons with Disabilities and Selective Screening Policies

Janet E. Lord

Abstract

The adoption of the Convention on the Rights of Persons with Disabilities introduces a disability narrative into the human rights framework and, in so doing, confronts various tensions within the received set of human rights obligations. A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening. A reproductive rights analysis situated within a traditional autonomy framework – according to which independence in reproductive decision-making by a woman is paramount – cautions against limitations and restrictions on reproductive choice. This article addresses the implications of the human rights principles in the CRPD in relation to the issue of disability-selective antenatal screening protocols that is attracting the attention of disability advocates worldwide. It argues that the CRPD calls into question the compatibility of selective screening with disability rights principles, particularly as currently practiced, and at the same time affirms the right to reproductive choice.

Introduction

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 adoption of the Convention on the Rights of Persons with Disabilities (CRPD, 2006) introduces a disability narrative into the human rights framework and, in so doing, confronts various tensions within the received set of human rights obligations. States are required, under the CRPD, to undertake reviews to assess, among other things, the socio-contextual conditions within which policies regarding disability are implemented and the resulting impact of such policies. 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 (CRPD, 2006, art. 3). [1]

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 (Asch, 2003; Parens & Asch, 2000; Asch, 1999). 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 (CRPD, 2006, arts. 21 & 25).

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. On the other hand, a reproductive rights analysis situated within a traditional autonomy framework – according to which independence in reproductive decision-making by a woman is paramount – cautions against limitations and restrictions on reproductive choice. There is thus a discernible tension between the disability rights narrative that the CRPD projects and the received human rights framework, in particular that which protects reproductive rights and reproductive choice. The adoption of the CRPD provides a fresh, if not definitive, human rights analysis on what has already prompted a rich literature grounded primarily in disability studies and bioethics. This article addresses the implications of the human rights principles in the CRPD in relation to this debate and examines the lively disability advocacy around this issue that is attracting the attention of disability advocates worldwide. It argues that the CRPD calls into question the compatibility of prenatal selective screening with disability rights principles, particularly as currently practiced, and at the same time affirms the right to reproductive choice, as reflected in and affirmed by the CRPD.

Devaluation of Lives through Quality of Life Assessments

Evaluating an individual’s quality of life informs a vast range of medical decision making and evaluative processes (Schalock, Bonham & Marchand, 2000). Scholars working from a disability studies orientation emphasize that policies grounded in quality of life assessments too often have the effect of reinforcing the historical stigmatization of a persons with disabilities (Stein, Lord, & Weiss, 2012; Groce, Chamie & Me, 2000; Silvers 1998). This perspective was highlighted by the Committee on the Rights of the Child, the treaty body that monitors implementation of the Convention on the Rights of the Child. The Committee summed up concerns surrounding the devaluation of the lives of persons with disabilities and attendant assumptions about quality of life as follows:

All children were equal members of the human race, discriminatory laws which denied their right to life should be repealed. Public debate should take place on the unspoken assumption, underlying much medical and scientific research, that we should be striving towards the goal of perfection in human beings. It was one thing to work to eliminate impairment but quite another to eliminate the person with the impairment. We must be clear what we mean when we talk about prevention. It was of course vitally important to work towards the creation of a safer world for children in which the risks of impairment and harm were minimized, but the solution was not through the denial of life itself as a preventive strategy. Rather, we must celebrate diversity and learn to celebrate the birth of every child, with or without disability. (Committee on the Rights of the Child, para. 329).

These insights have spurred changes in conceptualizations of quality of life assessments, resulting in person-centered quality of life approaches informed by self determination, social inclusion, among other concepts. As Asch has emphasized, traditional quality of life assessments can have the effect of offending human rights principles, including human dignity and respect for difference, among others (Asch, 2003).

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

The disability narrative emerging from disability studies, as well as disability law, policy and advocacy, reflects a variously articulated socio-contextual understanding of disability (Hahn, 1983; Kayess and French, 2007; Stein & Lord, 2012). A social model perspective properly understood does not deny the reality of impairment or its impact on an individual. It does, however, challenge physical and social environments – and legal frameworks – to accommodate impairment as an anticipated incident of human diversity. This perspective also emphasizes that the isolation experienced by persons with disabilities inhibits their meaningful contribution to their societies, thereby undermining community cohesion and development. As far as international law and policy goes, the preamble of the CRPD, together with Article 1, captures the idea associated with the social model of disability in describing disability as a condition arising from “interaction with various barriers [that] may hinder [disabled peoples’] full and effective participation in society on an equal basis with others” (CRPD, 2006, art. 1).

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. For Joan Retsinas, “[b]oth premodern as well as contemporary societies have regarded disability as undesirable and to be avoided” and while “[o]ur society still does not countenance the elimination of diseased/disabled people... it does urge the termination of diseased/disabled fetuses.” (Retsinas, 1991, pp. 89-90).

Reflecting the same sense that attitudes are socially constructed and can impact reproductive decision-making, the Committee on the Rights of the Child has repeatedly expressed its concern regarding sex selective screening and abortion and, trenchantly, has recommended to States parties within the context of State reporting that studies be undertaken to “determine the socio-cultural factors which lead to practices such as female infanticide and selective abortions, and develop strategies to address them” (Committee on the Rights of the Child, Concluding Observations India, para. 49). It is incumbent on States to incorporate into CRPD policy reviews pursuant to Article 4 of the CRPD – including its policies on disability selective antenatal screening – a social model of disability assessment, including undertaking and analysis of the socio-contextual conditions within which such policies are implemented and their resulting impact (CRPD, 2006, art. 4).

New Zealand Screening Program

The adoption of the CRPD and corresponding disability law and policy reform at the domestic level is generating disability advocacy efforts directed at prenatal disability-selective screening programs. The case of prenatal screening under a programme, “Antenatal screening for Down syndrome and other conditions,” implemented by the New Zealand Ministry of Health’s National Screening Unit (NSU), is an example of advocacy tied directly to the adoption and ratification of the CRPD by New Zealand.

Antenatal screening for Down syndrome and other conditions was first made available to pregnant women in New Zealand in 1968. In 2005, the NSU adopted a framework for screening programs (Ministry of Health, 2005). In October 2007, the government agreed to quality improvements to the program “to ensure consistency with best practice” (Ministry of Health, 2007). Accordingly, Guidelines for all health practitioners who are offering antenatal screening for Down syndrome and other conditions in New Zealand were adopted in November 2009 (Ministry of Health, 2009). The programme is reported to be promoted and funded by the government at a cost of $9.4M per year; outcomes of the screening programme are a reduction in the number of births of people with Down syndrome to the extent that some 90% of pregnancies with a prenatal diagnosis end in termination of the pregnancy (Saving Downs, Action so Far).

In October 2011, two non-governmental organizations, Saving Downs and the Spina Bifida Association of New Zealand, met with the Chief Commissioner of the Human Rights Commission (HRC) to discuss the practice of antenatal screening for Down syndrome and other conditions. The Commissioner agreed to consider the analysis of the group and allies in their coalition regarding the application of the CRPD to the practice of antenatal screening for disability. In addition, the NGOs initiated a campaign, calling on the New Zealand Government to cease the practice of birth prevention of persons with Down syndrome and Spina Bifida which was the cause of great distress within the communities of affected persons and families (Saving Downs, Submission to the New Zealand Human Rights Commission, 2011). Campaigners stressed that antenatal screening must be solely directed towards ensuring that prospective parents, along with their unborn children, are provided with “life affirming, unconditional and unbiased care, support and accurate information about living positively with these conditions” and in such a way that affirms respect for all human life, including persons with disabilities.

As part of the campaign, a coalition led by the group, Saving Downs, issued a complaint to the Health and Disability Commissioner which resulted in the NSU commencing a process of revising the consumer resources and health practitioner guidelines associated with the screening programme.[2] As part of the process, the NSU agreed to move away from the routine offering of screening for Down syndrome to all pregnant women to merely advising them of the availability of screening (Saving Downs, Press Release, 2012). Draft revised guidelines were completed in March 2012 and issued to invited parties for comments, resulting in numerous and detailed submissions (New Zealand Ministry of Health, Draft Guidelines for Health Practitioners, March 2012). Key requests included a public inquiry that would review the screening program against the principles of the CRPD; develop an action plan for addressing areas of conflict between the programme and the CRPD, and oversee and monitor the implementation of such an action plan. Core aspects of the NGO submissions included advising pregnant women and their partners that: (1) participation in the screening program may do more harm than good as a result of miscarriage and morbidity due to diagnostic testing; and (2) that any benefit of prenatal testing to the unborn child, for instance to indicate therapeutic intervention, should be investigated as late as feasible in the pregnancy, to avoid harm.

The inputs of the coalition were inspired, in large part, by the experience of parents, expressed in testimonials, that the policy, as practiced in New Zealand, was heavily skewed toward termination following screening that disclosed a positive result for a disabling condition such as Down syndrome (Saving Downs, Sept. 12, 2012).[3] Moreover, the coalition pointed to the lack of any consultation with people with Down syndrome in the formulation of the screening policy and protocols. The coalition argued that its advocacy “seeks to ensure that the NSU comply with the principles and objectives of the CRPD”; and that “the presentation of any screening programmes to be based in a social model of disability and not a medical model of disability” (Saving Downs, Action So Far). It also emphasized that assumptions about disability as deficit and pathology inherent in New Zealand’s articulation of its disability-selective antenatal screening program is likely to lead to different outcomes, namely, fewer births of the population targeted for screening. In this regard, the policy as applied as a decision making tool designed to facilitate informed choice falls short in that it clearly favors one particular kind of intervention over another. A policy so articulated and applied, as advocates asserted, offends disability rights principles, including human dignity, and is out of touch with modern understandings of disability. The section that follows considers the normative framework offered by the CRPD and its implications for the issue of prenatal screening policies and practices.

The CRPD Normative Framework

The United Nations adopted the CRPD together with its Optional Protocol by consensus on December 13, 2006. The Convention provides, in the form of a legally binding core human rights convention, a disability-specific framework for the civil, political, economic, social and cultural rights of persons with disabilities.

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.

CRPD Purpose and principles

Disability-selective antenatal screening, as with all health policies, must not offend the object and purpose of the CRPD and must be consistent with its principles (Vienna Convention on the Law of Treaties 1969, art. 26). Screening policies, like all policies, are subject to review by States Parties to the CRPD and must conform also to its purpose which is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (CRPD, 2006, art. 1).

The principles in Article 3 of the CRPD are to be applied to enable the rights of persons with disabilities and, thus, must be disability-specific in their application (CRPD, 2006, art. 3). These principles are not new; they are reflected in human rights law generally and States are obligated to apply them systematically and with discipline and analytical rigor across the CRPD, including in relation to antenatal screening and, more generally, health policies (CRPD Reporting Guidelines, Annex 1, Sec. B, p. 7). The general principles in the CRPD of particular application to health policies include: Respect for inherent dignity; Non-discrimination; Full and effective participation and inclusion in society; and Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity. Policies that potentially offend one or more of the general principles of human rights law must be treated with extreme caution and heightened scrutiny and are subject to immediate review.

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” (Universal Declaration of Human Rights, 1948, Preamble). International human rights tribunals have repeatedly stressed the importance of interpreting human rights conventions in keeping with human dignity (Refah Partisi and others v. Turkey, 31 July 2001, para.43; Pretty v. United Kingdom, 29 April 2002, para. 65). As emphasized by the United Nations, “[w]hen the dignity of persons with disabilities is respected, their experiences and opinions are valued and are formed without fear of physical, psychological or emotional harm” (Office of the High Commissioner for Human Rights, 2012, p. 15. 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) (CRPD, 2006, arts. 3 & 4). Laws, policies and programs, including antenatal screening policies, are to be filtered through these principles and given full effect, both in terms of substance and process. (CRPD Reporting Guidelines, 2008). As put most eloquently by New Zealand’s Ambassador Don McKay, Chairman of the Ad Hoc Committee during its second half, that the process of negotiating the CRPD “truly enshrined the slogan of the interna¬tional disability movement, “nothing about us without us” (McKay, 2007, 2). Beyond the better outcomes associated with meaningful participation, protecting the due process rights of persons most affected reflects and works to ensure dignity. Historically, persons with disabilities have been subjected to laws and practices that deprived them of their legal capacity and, consequently of their autonomy and freedom to make choices about their lives such as how, with whom and where to live. Article 12 of the CRPD addresses the right to equal recognition before the law, and confirms that people with disabilities “enjoy legal capacity on an equal basis with others in all aspects of life” (CRPD, art. 12).

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 (Harmon, 2007). This raises the question as to whether the principle of participation in human rights law embodies the ability to associate with persons of one’s own morphology, an issue for which there does not appear to be a definitive answer in human rights law.

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. Here, the embrace of diversity triggers an anticipatory response according to which difference is expected and provided for, as in the provision of universal access to a built environment. 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) (CRPD, 2006, art. 1).

CRPD Substantive Rights

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 (CRPD, 2006, arts. 2&5). 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” (CRPD, 2006, art. 2) As defined in the CRPD, disability discrimination applies not only to persons with disabilities, but also to people associated with disabled persons, such as family members, friends, or caregivers. Further, the CPRD creates legal obligations calling for positive action in rendering all rights (right to health, information, education, among others) accessible, and requires participation and respect for autonomy (CRPD, arts. 3 & 4(3)). 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. This analysis appears to align with the understanding of discrimination adopted by the CRC Committee in the context of sex selective screening practices where the Committee noted that “[d]iscrimination against girl children is a serious violation of rights, affecting their survival and all areas of their young lives as well as restricting their capacity to contribute positively to society” and, further, that girl children “may be victims of selective abortion, genital mutilation, neglect and infanticide, including through inadequate feeding in infancy” (CRC Committee, General Comment No. 7, para. 11).

In a similar vein, the Platform for Action adopted at the Fourth World Conference on Women states as follows:

[I]n many countries available indicators show that the girl child is discriminated against from the earliest stages of life, through her childhood and into adulthood. All forms of discrimination against the girl child and the root causes of son preference, which result in harmful and unethical practices such as prenatal sex selection and infanticide; this is often compounded by the increasing use of the necologoesi to determine foetal sex, resulting in abortion of female fetus (Beijing Platform for Action, 1995, para. 259).

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 (CRPD, 2006, art. 25). These services include sexual and reproductive health, prevention of additional disabilities, and health-related rehabilitation. A further component of the obligation is to adopt measures that raise awareness about “human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care” (CRPD, 2006, art. 25). This dovetails with the obligation in Article 8 requiring States Parties to conduct effective awareness raising to promote a positive image of person with disabilities (CRPD, 2006, art. 8). States are required to “adopt immediate, effective and appropriate measures” in order:

• To raise awareness throughout society, including at the family level, of the rights of persons with disability, and to foster respect for the rights and dignity of persons with disability;

• To combat stereotypes, prejudices and harmful practices relating to persons with disability in all areas of life; and

• To promote awareness of the capabilities and contributions of persons with Disability (CRPD, 2006, art. 8).

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 (Committee on Economic, Social and Cultural Rights, General Comment 14). 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).

Studies of information currently provided to prospective parents within the context of disability-selective antenatal screening policy raise concerns and suggest that the standard required of health information is not being satisfied (Committee on Economic, Social and Cultural Rights, 2000). A component of ensuring access to information consistent within human rights principles and in keeping with medical ethics is neutral, or non-directive imparting of information (Asch, 2003). Part of ensuring that information is of good quality in the context of genetic counseling and screening protocols is providing information in a way that does not favor one decision over another. Asch, in discussing research findings, observed:

In situations where parents were raising infants and children with Down syndrome and cystic fibrosis, counselors stressed ways in which lives of the affected children would resemble those of non-disabled peers, focusing on capacities for education, stimulation, play and relationships. By contrast, the stories given to prospective parents if the diagnosis was made prenatally concentrated on medical complications and differences from the lives of non-disabled children (Asch, 2003, p. 334).

Studies of families with children with Down syndrome have found that most cope well and report benefits as well as challenges associated with having a child with Down syndrome (Cuskelly, P. Hauser-Cram, M. Van Riper). Studies also find positive effects for many brothers and sisters growing up with a sibling with Down syndrome (Skotko & Levine, 2006).

Beyond ensuring that clinicians impart information in the context of prenatal screening in a manner that does not direct decision-making in a particular direction, human rights principles support the provision of appropriate assistance to prospective parents to facilitate their child-rearing responsibilities. More specifically, human rights law makes clear that States are obliged to undertake measures to ensure that appropriate assistance is provided to parents, legal guardians and extended families to facilitate their child rearing responsibilities (Committee on the Rights of the Child, General Comment No. 7, 2005). 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.

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Notes

[1] The CRPD text, along with its drafting history, resolutions, and updated list of signatories and States Parties is posted on the United Nations Enable website at http://www.un.org/esa/socdev/enable/rights/convtexte.htm. For more on the CRPD, see Michael Ashley Stein & Janet E. Lord, Future Prospects for the United Nations Convention on the Rights of Persons with Disabilities, in THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES: EUROPEAN AND SCANDINAVIAN PERSPECTIVES 22 (Gerard Quinn & Oddny Mjöll Arnardóttir eds., 2009).

[2] A number of national as well as international organizations joined in supporting this effort including: Down Syndrome International; The New Zealand Down Syndrome Association; Disabled Persons Assembly NZ Inc.; People First New Zealand Inc. – Nga Tangata Tuatahi; The Tiaho Trust; Spina Bifida Association of New Zealand; and Saving Downs.

[3] For a comprehensive overview of the arguments against these screenings as practiced, see Saving Downs, Comments from Saving Downs, Antenatal Screening for Down Syndrome and Other Conditions – Draft Guidelines for Health Practitioners, 2012 (on file with the author); Savings Downs, Mothers Being Encouraged to Have Late Term Abortions for Down Syndrome and Spina Bifida, http://www.savingdowns.com/mothers-being-encouraged-to-have-late-term-abortions-for-down-syndrome-and-spina-bifida/


Contributor

Janet E. Lord, Senior Research Associate
Harvard Law School Project on Disability
Senior Partner, Disability Inclusive Development, BlueLaw International
Adjunct Professor of Law, University of Maryland School of Law
LL.M., George Washington University Law School
LL.B. & LL.M., University of Edinburgh (Scotland)

Ms. Lord participated in all of the drafting of the Convention on the Rights of Persons with Disabilities, 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. The views expressed herein do not necessarily reflect the views of any organization with whom the author is affiliated.

Email: lord@american.edu


 

International Journal of Disability, Community & Rehabilitation
Volume 12, No. 2
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ISSN 1703-3381
  

  
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