I wish I had known sooner: stratified reproduction as a consequence of disparities in infertility awareness, diagnosis, and management

ABSTRACT

Infertility affects one in eight couples in the US, yet many couples report feeling blindsided by the diagnosis. Lack of awareness about infertility can lead to missed opportunities for prevention, delays in diagnosis, and greater emotional distress when a diagnosis is made. This paper reports on the results of interviews with 54 American women experiencing infertility, conducted via phone between 2013 and 2015 with participants from across the country. The interviews explored whether differences in infertility awareness were related to patient trajectories for time to diagnosis and initiation of treatment. Interview data indicated a significant lack of informational resources for these women concerned about fertility. Older participants expressed regret that they were not educated about age-related fertility decline, while patients with infertility secondary to medical conditions often reported delays in diagnosis and lack of counseling about fertility implications. Participants’ data also revealed that infertility was consistently absent from sex education curricula and that minorities may be more likely to experience delayed diagnosis of infertility and lack of appropriate fertility counseling. These findings suggest that the inequitable distribution of health information and education about reproduction is one mechanism by which experiences of infertility can become racially stratified.

KEYWORDS:

• Infertility
• fertility
• sexual education
• reproductive health
• sexual health

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Notes

1. Increasing education about age-related fertility decline does not equate to a simple prescription to hasten childbearing; rather, it can mean making women aware of multiple ways of having the families they envision. At the same time, it points to the importance of not only increasing education and awareness about infertility, but also practical support for such endeavors, since elective egg freezing is currently prohibitively expensive for most women without insurance from their employer.

Additional information

Funding

This study was funded by the Harvard Graduate School of Arts & Sciences’ Christopher G. P. Walker Fellowship, Merit Term-Time Fellowship, and Dissertation Completion Fellowship.