By: Dr Tina Stavrinaki
This submission has been posted as part of a blog series that seeks to profile the newly created NNHRR Working Group on Economic, Social, and Cultural Rights blog series, its vision and plans, and to highlight the expertise of its members, showcasing their research and/or contributions to ESCR.
Introduction
The dialogues between the UN treaty bodies and the States parties to the UN human rights treaties under the reporting procedure offer insights on the interpretation of human rights obligations in relation to the right to health. Even though discussions often focus on concerns related to access to healthcare, States’ efforts to explain how they fulfil their commitments reveal gaps in fully measuring the effects of their health policies. This post discusses three examples drawn from dialogues on the reports submitted by the Netherlands under the Convention on the Rights of Persons with Disabilities, the International Convention on the Elimination of All Forms of Racial Discrimination and the Convention on the Rights of the Child: instances where pregnant women’s ability to provide informed consent is jeopardised, while prejudice against children born with disabilities and higher infant mortality rates in asylum centres are overlooked in the evaluation of these measures. Although these examples seem at first disconnected, they demonstrate a failure to fully adhere to a human rights-based policy by prioritising factors that are not necessarily related to human rights or that fail to address concurrent human rights obligations.
Prioritisation of a medical model of disability in prenatal care
The CRPD provided guidance on the distinction between the medical model of disability and the human rights one in its General comment No. 6 (2018) on equality and non-discrimination. The medical model “reduces” persons with disabilities to their impairments and does not recognise them as rights holders, while the human rights model recognises that disability is a social construct and impairments must not be taken as a legitimate ground for the denial or restriction of human rights. In its concluding observations on the initial report of the Netherlands, the Committee on the Rights of Persons with Disabilities (CRPD) expressed its concern on reported undue influence on women undergoing non-invasive prenatal testing (NIPT) for the detection of foetal impairments (see the report submitted by the civil society organisation “EU for trisomy 21”). The Committee recommended that the State ensure that women can make fully informed decisions on their pregnancy without undue influence (see CRPD/C/NLD/CO/1, paras. 55 c and 56 d). During the dialogue, the delegation reassured the Committee that “ it was inaccurate that parents were discouraged from carrying to term a foetus that would be born with a disability” and that pregnant women had access to extensive consultation with specialists to understand the implications of diagnosis for the child’s quality of life, life expectancy and their own choices. Moreover, the delegation reaffirmed the commitment of the Netherlands to article 23 of the Convention on the Rights of the Child which recognises the right of children with disabilities to enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community (see CRPD/C/SR.726, paras. 3-4). On the other hand, parents of children with Down syndrome argue that the prevalence of NIPT may have a negative impact on their social acceptance and inclusion. The Committee remained doubtful about this so-called “disability prevention” approach, as described by an expert, as it embodies a medical model of disability and not a human rights model.
Pregnant women in asylum centres and infant mortality
Exclusions and disproportionate restrictions in the realisation of the right to health, based on arbitrary taxonomies of rights holders, are also the result of migration and asylum laws and policies. Disparities in health outcomes often mirror power relations shaped based on gender, racism, migration status and other structural determinants resulting in disproportionate barriers to quality healthcare and unsurprisingly, negative health outcomes. Quality prenatal and postnatal care for pregnant women in vulnerable situations was an issue of concern for the Committee on the Rights of the Child (CRC) during the examination of the periodic reports of the Netherlands in 2022. The CRC spotted the link between disparities in infant mortality and access to quality prenatal and postnatal care for pregnant women in vulnerable situations, including in asylum centres, and recommended in its concluding observations the inclusion of these women in the policies as well as the establishment of a national mechanism for early identification of at-risk groups of pregnant women. This issue did not come as a surprise. In 2020, a retrospective study comparing data concluded that women living in the asylum shelter in Ter Apel face a risk of their child dying around birth that is seven times higher than the average for Dutch women in the same region (see also here), while a more recent one identified suboptimal factors which contribute to alarmingly adverse perinatal and maternal outcomes among refugee women. Apart from the lack of continuity of care, accessibility of care is severely affected by language barriers and inadequate involvement of official interpreters.
Language barriers in access to healthcare
The negative role of language barriers in access to healthcare in the Netherlands was also discussed by the Committee on the Elimination of Racial Discrimination (CERD) in 2021 and earlier by the Committee on Economic, Social and Cultural Rights (CESCR). The CESCR focused on the impact of the decision to abolish subsidies for interpreter services in health-care facilities on migrants’ access to health and its implications on the requirement to obtain informed consent to medical treatment. The CERD, on the other hand, indicated “persons with low levels of Dutch-language proficiency” as the group impacted by this measure and recommended that the State party remove language barriers and work with organisations representing health professionals and patients to ensure that people with low levels of Dutch-language proficiency have access to medical care without discrimination. During the dialogue with the CERD, no justification was given for the termination of compensation for interpretation and translation services, nor was there any discussion of potential alternative measures.
These shortcomings show interconnected aspects of a model which does not seek as a priority to comply with human rights norms. A State prioritises a medical model if the authorities fail to offer NIPT while also co-designing with persons with disabilities appropriate measures to combat the stigmatisation of babies born with disability. The right to equality and non-discrimination in the enjoyment of the right to health is breached if the authorities fail to assess health-harming conditions and do not provide effective access to prenatal and postnatal care. In contrast, a human rights approach focuses on integrating human rights norms in health systems and public health policies to assess their legality and effectiveness. The ultimate goal is to improve health by enhancing the transformative effect of their policies on structural determinants of health. This entails procedural requirements to ensure participation and empowerment of rights holders, in particular those disadvantaged due to inequalities and discrimination. A human rights policy provides for monitoring and accountability mechanisms and uses the outcome of those mechanisms to inform health policies and improve them based on evidence. These principles guide States in recalibrating their laws, policies and decision-making processes to ensure that national authorities, as duty bearers at national level, respect, protect and fulfil the right to health.
A human rights-based approach in health is also critical to address global challenges. In these difficult times, it is hopeful that the Netherlands, as leading supporter of the World Health Organization, reaffirmed its commitment to global health. The country possesses all the necessary resources to lead with a human rights-based approach to health domestically too. It is a crucial challenge to tackle, in some cases a matter of life or death.
Bio:
Dr Tina Stavrinaki is a member of the UN Committee on the Elimination of Racial Discrimination and an Assistant Professor with the Netherlands Institute of Human Rights at Utrecht University.