Infertility impinges on the human right to have a child, according to new research published today, which also calls for greater healthcare equity and more inclusive reproductive health surveillance.
The ability to decide if, when, and how often to reproduce is a human right and a biomedical and social goal, says the report entitled 'Reproductive Justice for the Invisible Infertile: A Critical Examination of Reproductive Surveillance and Stratification' in the online journal, Sociology Compass.
The report, by researchers at Lancaster University in the UK and the University of Oregon in the US, says that while biomedical attempts to address infertility have proliferated, their availability has been unequally distributed to individuals and couples who need access to services.
The authors document how reproductive health statistics are produced in the United States, highlighting who is left out of these statistics. They argue that reproductive health statistics have created a self-reinforcing and false notion that infertility is primarily a problem faced by white, middle-class women.
This, adds the report, creates a group of people known as the 'invisible infertile', including groups such as working class people, those with disabilities, and people in prison. The reproductive needs of the invisible infertile are often overlooked.
In addition to critically assessing scientific tools, the report also examines the history of family planning in the U.S. This includes the inception and provisions of Title X, the federal family planning program which funds reproductive health clinics for the public.
The report comes in the midst of efforts by the Trump administration to scale back Title X provisions - efforts which have resulted in a scaling back of public reproductive health services and closure of some Planned Parenthood clinics.
The Title X program is more likely to be used by the invisible infertile, but does not provide an adequate array of infertility services. Meanwhile, the private insurance system provides more generous coverage for services, but is often out of reach for marginalized groups.
As a result, according to Lancaster's Dr Jasmine Fledderjohann and Oregon's Dr Liberty Barnes, inequalities in rates of infertility, reproductive health surveillance, and access to reproductive healthcare to address infertility abound.
"Individuals who are excluded from infertility tracking, services, and treatment - the 'invisible infertile' - are structurally limited in their ability to realise their human right to reproduce," says Dr Fledderjohann.
"Using existing resources in public and private clinical spaces may be a useful starting point for addressing these disparities, but a broader commitment to equitable and inclusive surveillance and healthcare provision is also needed. In other words, recent efforts to scale back Title X provisions are a step in the wrong direction."
Drs Barnes and Fledderjohann apply the reproductive justice framework, developed by black feminist activists in the 1990s, to their analysis of infertility surveillance and treatment.
The reproductive justice framework outlines three core human rights: to have a child, not to have a child, and to parent children in a safe and healthy environment.
They argue that, where infertility is unrecognized and access to services to treat infertility is restricted to the privileged, the invisible infertile are denied their right to have a child.
This analysis highlights systematic and linked exclusions of marginalized groups from reproductive health surveillance and the public and private provision of reproductive healthcare, including: older, non-white, single parents, working class, LGBTQ, geographically remote, less educated, HIV-positive, institutionalised, and disabled individuals.
The research suggests that because the primary focus of state-run reproductive health initiatives, including observation, family planning and healthcare access is population control through pregnancy prevention, the needs of the infertile are often ignored.
The research, a critical review of sociological and public health literature, provides evidence that, for marginalized groups, pregnancy prevention and contraception are prioritised over childbearing and rearing.
"This contributes to the invisibility of infertility amongst marginalised groups and undermines reproductive health as a broader population goal and human right," said Dr Barnes.
"The way we monitor and financially support public reproductive health services is, simply put, a matter of human rights and reproductive justice," she continued.
While the research has focused on the US as a case study, the authors also note that the processes outlined in the report operate within and between countries to create 'invisible infertility' around the globe.
The researchers call for social science, clinical and public health communities to approach their work through a reproductive justice framework.
"Reproductive health researchers and family planning clinicians can begin by recognising the breadth of reproductive health, acknowledging that achieving pregnancy is as important to individuals' lives as avoiding it," the report concludes.