The invisible infertile: How cultural beliefs can shape statistics

As we begin to better understand reproductive health as a human right, experts explain how some people have fallen through the cracks in infertility data

Many marginalised groups are excluded from fertility surveys (Shutterstock)

Reproductive health is now seen as a basic human right. This includes the ability to have children. Large-scale population surveys are used to identify infertility and help ensure the rights of those who are struggling to conceive. But our research has revealed some people – particularly those who are already marginalised – are falling through the gaps.

An estimated 15 per cent of couples worldwide are infertile. But measuring infertility across populations is not easy, especially when some social groups are under the radar of survey data-sources.

In our analysis of survey tools, we identify these people as the “invisible infertile”. The suffering of the invisible infertile is twofold. Those who cannot have the children they desire may experience a wide range of issues, ranging from shame and stigma to financial ruin. But because their infertility is invisible to public agencies, they may not receive the medical care and social support that they so dearly need.

Who’s missing?

In the US, a series of family growth surveys, called the Integrated Fertility Survey Series (IFSS), has collected data on fertility since the 1950s. Men were excluded from these family growth surveys in the US until 2002. No large-scale population data on American men and reproduction exists prior to the 21st century. Women were the primary source of information on everything from condom use to impotence.

In other words, men’s experiences and perspectives were entirely missing from the survey series until the start of this century. Let that sink in.

Women of colour and single and divorced women were excluded from the first wave of the IFSS. Single childless women were excluded until 1982.

In the IFSS, participants were presumed to be heterosexual until questions were added in the last decade to allow respondents to self-identify as LGBT.

Meanwhile the Demographic and Health Surveys, used in 90 low and middle-income countries around the world for nearly 40 years, investigate fertility and family planning. But none of the questions ask explicitly about infertility.

Researchers piece together infertility statistics using marital and pregnancy histories. Yet these estimates are designed to be conservative measures, and are therefore likely to be low. Previous research has also shown that people may suspect infertility well before they would be identified as infertile in these sorts of estimates. Therefore, the estimates are particularly likely to be low when compared to how people view their own fertility.

Cultural beliefs shape statistics

As the examples above show, men, racial and ethnic minorities and LGBT families have been explicitly excluded from some survey data. We also know single women were excluded from early population surveys and marriage rates are lower for people with disabilities and lower-income individuals.

It is safe to speculate that the data does not accurately capture the prevalence of infertility among those with disabilities, chronic illness and lower incomes.

Survey tools are not objective measures. They reflect a cultural context which prizes the fertility of some people and discourages the fertility of others. Sampling practices and questionnaire design mirror our social values. The reproductive health of white, Western, middle-and-upper class, heterosexual married women is prized and their infertility acknowledged. The invisible infertile fall outside of this ideal.

Demographic surveys are funded and administered by wealthy Western nations. In the West, strong international policy focus has been placed on fertility reduction in low and middle-income countries. These interests overlook the physical, emotional, economic and social devastation tied to infertility and childlessness.

The omission of men from survey samples could perhaps be chalked up to broader cultural beliefs about reproduction as “women’s work”. But infertile men have no doubt suffered stigma and confusion in navigating the medical system because male infertility is generally invisible.

The invisibility of marginalised social groups in infertility tracking reflects broader social beliefs about who can and should reproduce. The offspring of privileged social groups are seen as a boon to society. The offspring of marginalised groups are perceived as a burden.

Demographers, social scientists, medical professionals, public health researchers and humanitarians must evaluate the data sets they use and carefully consider who may be rendered invisible by sampling practices or survey questionnaire design.

There is a need to design survey instruments that assess all aspects of reproduction – from high fertility to voluntary childlessness – and is inclusive of all marginalised groups and family formations.

Liberty Barnes is a medical sociologist at the University of Oregon and Jasmine Fledderjohann is a lecturer in sociology and social work at Lancaster University. This article first appeared on The Conversation (theconversation.com)