INFERTILITY AND HUMAN RIGHTS: A JURISPRUDENTIAL SURVEY.

• Author: Davis, Martha F.

1. Introduction

   1. The Importance of a Human Rights Framework for Infertility

      Infertility--defined as "a disease of the reproductive system"--is a global health challenge affecting millions of individuals. (1) Yet, evidence-based and scientifically accurate information about infertility, as well as infertility treatment, is difficult or impossible to access for many of the affected individuals. Impediments may include a government's refusal to allocate resources to address the issue, the expense of infertility treatment, the stigma experienced by infertile individuals, and the discriminatory exclusion of some infertile individuals from access to treatment. Systemically poor health care infrastructures and inadequate training may also contribute to increased incidences of infertility. (2)

      While this paper focuses on the disease of infertility, individuals and couples experiencing childlessness for other reasons are often burdened by the same social and emotional harms. Childlessness arising from legal, regulatory, or social constraints is no less consequential for individuals than disease-based childlessness. For purposes of this paper, we identify childlessness outside of infertility, sometimes called "social infertility," as "conditional childlessness." (3) We believe that the phrase "conditional childlessness"--more fully defined below--is a better descriptor of the distinctions between infertility as defined by the World Health Organization (WHO), and other conditions giving rise to childlessness. The human rights norms applicable to conditional childlessness are not fully explored in this paper, but where there are overlaps between the jurisprudence concerning infertility and conditional childlessness, we analyze the pertinent human rights norms applicable to both circumstances.

      We believe that human rights norms can guide jurisdictions in structuring their responses--both proactive and reactive--to infertility (as well as conditional childlessness). A number of studies and commentaries have identified the relevant human rights concerns raised by infertility and have examined the ways in which human rights concepts map on to clinical, social, and epidemiological observations of childlessness--whatever its cause. (4) Based on this body of analysis, there is no question that the failure to prevent infertility, treat infertility, and recognize and respond to infertility and conditional childlessness raises human rights concerns. (5) In particular, infertility implicates the right to health (e.g., International Covenant on Economic Social and Cultural Rights (ICESCR)), the right to equality and non-discrimination (e.g., International Covenant on Civil and Political Rights (ICCPR), Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW)), the equal right to determine freely and responsibly the number and spacing of one's children (e.g., CEDAW), the right to benefit from scientific progress (e.g., ICESCR), and the rights to privacy and to form a family (e.g., ICCPR). Conditional childlessness may also be analyzed with reference to these rights, particularly the rights to equality and nondiscrimination, the right to benefit from scientific progress, and the right to privacy and to form a family. These core human rights are set out in international human rights texts as well as regional human rights instruments such as the African Charter on Human and Peoples' Rights and the European Charter of Human Rights. (6)

      While human rights texts clearly articulate a set of norms that are relevant to infertility, the question remains whether international and national-level decisionmakers charged with interpreting and implementing these rights have employed human rights frameworks. This survey focuses on that open question: What is the evolving human rights jurisprudence relating to infertility?

      To answer that question, we examine international and national practices as they exist. Our purpose is not to offer critiques, but to illuminate the extent to which international and national policies and practices regarding infertility have already engaged with human rights norms, and to explore the future implications of that approach.

      For purposes of this survey, we take the position that the term "jurisprudence" goes beyond the text of international instruments and reflects the idea that human rights law becomes fully realized as it is applied to particular issues and fact patterns. Accordingly, this global survey acknowledges relevant human rights texts, but focuses on human rights law "as applied" to issues of infertility by both international and domestic bodies, including courts and other adjudicative bodies, human rights monitoring bodies, human rights commissions, ombuds, and other policymakers. Further, this survey takes into account the understandings of human rights and infertility urged by advocates in the context of human rights monitoring. We believe that this comprehensive approach can most accurately determine the extent to which international, regional, and domestic jurisdictions have addressed issues of infertility through a human rights lens and can help ascertain whether--and how--a more consistent application of human rights frames might address gaps in human rights protections for affected individuals.

      As described below, using this wide lens to explore the human rights jurisprudence relating to infertility, we find that both international and national bodies have recognized human rights issues raised by infertility. Beyond simply recognizing the connections, some bodies have gone farther to address and apply the nuances of human rights frames in particular situations involving infertility law and policy. While more challenges remain--and we describe some of these challenges at the end of this article--the human rights framework holds considerable promise as a basis for further developing international and national policies concerning infertility and, by extension, human rightsbased approaches to conditional childlessness.

   2. Definitions

      Several key terms play an important role in this analysis.

      1. Infertility

         The WHO defines infertility for clinical purposes as "a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse." (7) The WHO adopted this definition in 2009 as part of its general Glossary of definitions, and we use it here as a common point of reference. (8) Though the WHO's definition is widely cited as a clinical description of infertility, it is not the only possible definition, and there are variations used in clinical practice, infertility research, and policymaking. (9) Some definitions, for example, identify longer or shorter time periods of trying for pregnancy before achieving a diagnosis of infertility. (10) Definitions may also vary with the age and gender of the individuals. (11)

         Importantly, a clinical definition of infertility may not be the operative legal definition adopted by policymakers within a jurisdiction. For example, in some jurisdictions, a diagnosis of infertility is reserved for individuals attempting to conceive or sustain a pregnancy within marriage. (12) This legal limitation of the term "infertility" to married couples is not clinically dictated, but rather reflects a legislative choice. Case law may also determine the legal definition of infertility in a given jurisdiction. For example, some adjudicators have rejected legislative definitions of infertility that could limit the ability of same-sex couples to gain access to assisted reproduction. (13)

      2. Primary and Secondary Infertility

         Primary infertility is the inability to have any live birth, while secondary infertility is the inability to have a live birth after previously successful procreation. (14) For purposes of our investigation of human rights jurisprudence, we do not distinguish between primary and secondary infertility, but the terms appear in this report when citing other materials recognizing the distinction.

      3. Conditional Childlessness

         While this paper focuses on the disease of infertility, individuals and couples experiencing childlessness for other reasons are often burdened by the same social and emotional harms. Childlessness arising from legal, regulatory, or social constraints on access to fertility treatments may be as consequential for individuals as disease-based childlessness. For purposes of this paper, we propose defining childlessness attributable to legal or social conditions, rather than medical factors, as "conditional childlessness." (15) Same-sex couples, single individuals of either sex who wish to become parents in the absence of a partner, and couples in which one or both partners are transgender are most commonly identified with this category. In some instances, these couples or individuals are fertile in the sense of being disease-free but may require medical assistance to procreate on their own terms. We note that the legal and social conditions constraining reproduction are not limited to sexual orientation, gender identity, or partnering choices. While infertility itself is a disability, otherwise fertile disabled individuals or people living with HIV may experience conditional childlessness because of laws or practices limiting their access to reproductive technologies. (16) Age--a factor that has physiological components but would not be characterized as a disease--may also give rise to conditional childlessness based on provider policies that impose age-based restrictions on infertility treatments. (17)

         Our use of the phrase "conditional childlessness" does not in any way represent an agreed definition proposed by the WHO or any other organization. We are proposing the phrase in the belief that "conditional childlessness" usefully distinguishes between the disease of infertility as defined by the WHO and classified in the International...