|Overview : |
Zambia has ratified international and regional frameworks that seek to promote and protect human rights of citizens, some of which have been enshrined in the Bill of Rights, Part III of the Zambian National Constitution of 2016. The National Constitution guarantees human rights and fundamental freedoms of all citizens in political, social, legal, economic and cultural settings. It also provides for the respect of universal values and principles such as human dignity, equity, social justice, equality and non-discrimination in the delivery of public good. Additionally, it underscores the right to health specifically access to health care services, education and social protection, and access to reproductive health, family planning and related information and services. The Constitution further protects its citizens from being subjected to torture or any kind of inhuman or degrading treatment. Other related rights enshrined therein include the right to privacy, the right to personal liberties, right to non-discrimination, and equal protection and equality before the law, and the right to the highest attainable standard of physical and mental health.1
While the Constitution provides for equal rights for all citizens, some segments of the society do not benefit from the protection of these rights enshrined in the Constitution. One of these community groups are Intersex persons. An intersex person is an individual with a wide range of sex characteristics that do not fit in the binary classification of male or female sex category. These traits maybe visible at birth, at puberty or may not show at all, as such an intersex person maybe denied the right to fully develop into the gender they identify with or attain the right to self-determination or expression. These rights are fundamental and underpin the development of a comprehensive and effective management protocol for Intersex persons in the public and private health facilities in Zambia.2 Zambia does not have a national policy guideline or national protocol for the medical management of Intersex persons.
Prejudice and discrimination of Intersex persons in Zambia remains high at all levels of society such as family, community, educational system and employment.3 In the health sector, human rights violations including breach of medical ethics, has led to corrective or normalization therapy aimed at infants administered by medical practitioners with or without the parents, and or other family members making decisions which might not necessarily be in the best interest of the child. Further there has been inadequate counselling provided to most family members on having an intersex child.4 This contravenes the Constitutional right of Zambian citizen’s to freedom from torture and degrading or inhuman treatment (Art.30). The gender assignment at birth is based on physical features or sex characteristics at the time and largely influenced by medical professionals and family members. Such medical interventions may disrupt the physical and psychological well-being of an individual, producing negative impacts with lifelong consequences. Other medical violations include irreversible genital surgery, sterilization, severe scarring, urinary tract infections, reduced or complete loss of sexual sensation, removal of natural hormones creating a dependency on medication, and a deep feeling of body violation.5 Intersex infanticide and abandonment of an intersex child is common in most societies. The secrecy and shame associated with being intersex results in nearly complete invisibility of the community and lack of recognition of their rights. In situations where the young person’s gender identity has been formed and can consent to medical surgery, often there is lack of appropriate services provided by the state to support the process, often costly for the average young person or family. Regulations or comprehensive guidelines for the management of intersex persons are nonexistent in the public or private sector.
Other legal barriers include failure to recognize intersex persons before the law due to the sex binary classification. Further challenges relate to non-existence of procedures for change of sex marker to suit the “identity” of the person as they develop into adulthood. It is essential to understand that not all adult intersex persons will want affirming surgery, or hormonal therapy hence legislation and procedures for sex identity “change” need to embrace sex diversity.
Human rights advocates and current scientific literature and practice on the issue of Intersex persons advise against unnecessary “normalizing” treatment of Intersex persons which results in an irreversible change and sterilization performed without informed consent and are rarely medically necessary.6 The right to choose or consent to any surgery should always be respected. Additionally, recognition of intersex persons before the law should address the swift provision of birth certificates, civil registration documents, identity papers, passports and other official personal documentation while respecting their right to self-determination7. Flexible procedures need to be observed when assigning and reassigning sex and gender in official documents. Human Rights Institutes need to discharge their responsibility of protecting and promoting the rights of Intersex persons. The appropriate sex and gender marker in a legal identification document (ID), becomes a gateway to an education system especially secondary and tertiary level, employment, and social economic development for most intersex persons.
There is a growing awareness amongst medical professionals who are rethinking normalizing treatment of Intersex infants and providing psychological support to the child and family as an alternative. The right to consent or informed choice has become a key ethical consideration in the decision-making process when managing an intersex infant. The Zambia Medical Association (ZMA)’s mandate is to champion the practice of medicine for the benefit of society through research and ethical practice. It further upholds the values and morals of society, the values of democracy, accountability, transparency and good governance. ZMA also recognises the rights of an individual to health and ensure adherence to ethical standards in the practice of medicine8. This recognition provides an opportunity to transform the medical fraternity in the way such cases have been managed historically.
There have been observed milestones towards the registration of Intersex persons pursuant to the November 2017 ruling by the High Court (Judge Betty Majula-Mung’omba) in her judgment in favour of an Intersex person. An instruction to the Register General of Births and Deaths to change the plaintiff’s birth records from female to male including with the Examinations Council of Zambia and schools to update their records was issued.9 This judgement offers an opportunity for the registration of births, deaths and marriages legislation and policy reform to ensure that the identity of Intersex person’s is protected. It also calls for all sectors to review their policies and laws that may have been discriminatory to the intersex community.
The National HIV/AIDS/STI/TB Council (NAC) and ZMA efforts towards advocacy for strengthening management of intersex persons across the public and private health facilities through the development of an Intersex Medical
Management Protocol are in line with the Constitutional rights to dignity, life, self-determination and right to health. It further resonates with ZMA mission of promoting high standards of medical practice and influencing policy and public opinion on health matters in Zambia as well as promoting universal access to quality health care.
The Legal Environment Assessment (LEA) on HIV and sexual and reproductive health that has been completed in Zambia under the leadership of NAC recently, facilitated the emergence of the Intersex community to be recognized as citizens with basic rights and needs that were different from transgender persons and other key populations. In addition, the Linking Policy to Programmes (LPP) project that is implemented by UNDP jointly with communities including young Intersex people, government partners, and civil society organisations, identified specific needs of Intersex persons and the challenges and opportunities associated with meeting those needs. The increasing visibility and recognition arising from this project and other similar initiatives, resulted in the establishment and registration of an Intersex led CSO. Such developments are expected to increase the voice of intersex groups. This will serve as a good basis for the work to be done to facilitate their full recognition, protection and promotion of access to all social, legal, economic, and health services that will transform them into well informed, motivated and healthy individuals who can contribute to society.
Experts and the Intersex community consider that a clear policy and protocol, that would streamline the medical management of an Intersex person’s health and wellbeing starting from birth to adulthood, as a critical element for the creation of a just and nurturing environment free from secrecy, stigma and discrimination. The policy guideline and protocol are also essential to ensure that children (and adults) born with differences in sex development enjoy their human rights, are not stigmatized and discriminated against and lead productive and fulfilling lives as citizens. An enabling legal and policy environment will also increase the availability of information on different forms of intersex variations and related challenges and increase the effectiveness of community-based intervention in addressing them.
UNDP in collaboration with the National AIDS Commission, Zambia Medical Association and the Intersex community therefore plans to support the development of a national policy guideline and protocol on Intersex issues. This policy document will be one of the first guideline in the SADC region for the medically management of Intersex persons. This Terms of Reference (ToR) therefore outlines the objectives, outputs, processes and deliverables of a consultancy to support development of a comprehensive management protocol for the of an Intersex Person in the public and private health facilities in Zambia.
Objectives of the Assignment
The overall objective of this assignment is to develop a comprehensive protocol for the medically management of intersex persons throughout their infant, adolescent and young adult (0 -24 years) development stage in the public and private health sector. Specifically, the consultancy willdevelop a protocol that serves as a guideline for the provision of comprehensive interdisciplinary care to intersex persons and their families, and recommend appropriate patient centered policies, informed by the intersex community to provide appropriate quality care, ethical, medical and psychosocial support to intersex persons.