“Nobody left behind”: the role of data registries in assisted reproductive technology

Abstract

“The freedom for all to live a flourishing life” is the big vision that underpins world-wide action and advocacy for human development. High-level global strategies, including the Sustainable Development Goals and United Nations Human Development Report, present plans of action that “nobody is left behind”. Central to living a flourishing life is the freedom and human right to found a family and have children. In the case of infertility, nobody is left behind if thosewhowish to access care have the freedom to do so; and, beyond access, find evidence-based treatment with a transparent track-record pertaining to outcomes. One of the international markers used to reflect access to infertility care is the number of assisted reproductive technology (ART) cycles per million inhabitants. Although numbers mean different things in different communities, it has been accepted that access is met if 3000 couples per million population undergoART per annum. This estimate is derived from an algorithm which considers infertility prevalence, non-ART pregnancies as well as treatment-independent pregnancies. However, it must be stated that the demand for treatment can be reduced to half of this theoretical need. Many factors are responsible, such as the influence of religion, as well as cultural and educational factors. Qualitatively, the freedom to access infertility care is met if interventions are available, affordable and acceptable. Affordability pertains to the ability of the individual or the society to pay for the intervention without incurring undue financial risks or harm. Availability comprises physical presence of facilities and interventions within reach of consumers. Acceptability implies that an intervention is acceptable to the patient and vice versa. In all of these domains, visible and invisible biases exist. In many health systems, poverty creates prominent and visible barriers in the affordability domain—and often similarly prominent but less visible barriers in the acceptability domain.