Medical stats have excluded the ‘invisible infertile’

The historical omission of certain groups from medical statistics casts doubt on the quality and accuracy of infertility research.

Men, women of color, single and divorced women, and those who self-identify as LGBTQ are among the “invisible infertile,” say coauthors Liberty Barnes, postdoctoral researcher at the University of Oregon, and Jasmine Fledderjohann of Lancaster University in the United Kingdom.

In a paper published in the journal Health Policy and Planning, they point out that the incidence of infertility among people living in high fertility areas, such as sub-Saharan Africa, is poorly assessed and often ignored. Around the world, the invisible infertile also includes racial and ethnic minorities, those with limited economic resources, those who do not have access to affordable healthcare, and persons with disabilities.

“I emailed the CDC with questions about male reproduction, and they said they couldn’t offer me any more information.”

An estimated 15 percent of couples worldwide are infertile, but that number hinges critically on the quality, inclusiveness, and availability of data sources used to track infertility, the two researchers say.

“Because these data and statistics are used for policymaking and decisions about reproductive health services, omission of these groups contributes to uneven access to state resources and health services,” the two sociologists write in the paper.

The research took root in 2004 when Barnes began studying the experiences of infertile men and sought data from the US Centers for Disease Control and Prevention in Atlanta.

“I found lots of data on the CDC website about female reproduction but virtually nothing about men,” Barnes says. “I emailed the CDC with questions about male reproduction, and they said they couldn’t offer me any more information.”

By 2008, statistics about men dealing with infertility and using infertility services began appearing on the CDC website. Those data, Barnes discovered, were coming from the Integrated Fertility Survey Series, which began in 1955 but did not begin capturing information about men until 2002.

The first wave of the survey series excluded women of color and single and divorced women. Single childless women were excluded until 1982. Participants were presumed to be heterosexual until questions were added in the last decade to allow respondents to self-identify as LGBTQ.

“The researchers who started the series were truly pioneers in their field and the datasets are fantastic,” Barnes says. “As I looked through the sampling, I discovered that the surveys historically focused on white married women. This isn’t news to anyone who works with these datasets directly, but many demographers and social scientists who rely on statistics generated by these data do not know this.”

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To further explore the issue, Barnes teamed with Fledderjohann, who had similarly identified invisibility of African women’s infertility while collecting data on infertility in Ghana. Together, they wanted to show that cultural beliefs shape the design of surveys and who gets included.

In Ghana and other low and middle-income countries, surveys had been designed amid concerns of overpopulation; the surveys did not assess whether respondents had experienced infertility.

“Demographers have to work the data in creative ways to produce infertility statistics,” Barnes says.

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In their paper, Fledderjohann and Barnes call for a broader examination of existing data to consider who is missing and the potential implications, revising the wording and design in surveys to reduce bias, and engaging policymakers, medical professionals, and researchers in an open dialogue about the invisible infertile.

Source: University of Oregon