Systemic racism impacts every aspect of healthcare, and reproductive health is no exception. While reproductive health research is underfunded and understudied, there's a growing body of evidence that shows the detrimental impact of racism on access to contraception, fertility treatment, maternal health outcomes, and infant mortality rates. Still, we have a long way to go when it comes to developing research that further exposes these inequities so we can do our part in helping to solve them.
Part of our mission at Modern Fertility is to make a meaningful impact on gaps in fertility research. But unless our own research accounts for the ways that racism impacts reproductive health, we may run the risk of perpetuating findings that rely on proxies (such as "race") rather than underlying racism, discrimination, and cultural stigmas experienced by people of color.
We took a hard look at our own research platform — which sends dozens of different surveys to customers — to understand what we could be doing better. We believe that transparency and visibility are key when doing work grounded in anti-racism, so here we're sharing how we approached this project, what our team learned throughout the process, and what's in store for our research around this topic in the future.
The pre-work: listening tour, development of key principles, and finding our partners
To get started, we spoke with Dr. Joia Crear-Perry, founder and President of the National Birth Equity Collaborative and Dr. Jamila Perritt, the President and CEO of Physicians for Reproductive Health and an advocate for reproductive justice, to better understand the current research efforts addressing racism in fertility. These discovery conversations highlighted the glaring gaps in outcomes data on preconception care and fertility treatments, and grounded our team in three key principles for addressing this topic:
- Impact: We aim to make our research as actionable as possible. We will aim to support research with feedback loops in mind, such that outcomes from our research make their way back into the hands of the people they are designed to serve.
- Intersectionality: We are committed to research that is as inclusive as possible — grounded in the reality that many of our consumers have multiple social identities that influence ways they experience health.
- Empowerment: Rather than a sustained focus on disparities, our research aims to also highlight resilience within communities of color.
Our next step was finding long-term partners to evaluate our research platform for inherent biases. We brought on Dr. Morine Cebert Gaitors and Dr. Tiffany M. Montgomery.
Dr. Morine Cebert Gaitors, PhD, FNP-C is a postdoctoral fellow in the National Clinicians Scholars Program and a student in the Master of Science in Health Policy Research program at the University of Pennsylvania. She is a women’s health nurse researcher studying psychobiological, clinical, and sociocultural factors that influence Black women’s decision making in reproductive endocrinology.
“I strongly believe that data detailing the preferences and experiences of women can truly accelerate change in reproductive health," says Dr. Gaitors. "In order to produce equitable change, there was an imminent need to capture the voices of all women who encounter the health system. I was excited to work with Modern Fertility to update the survey in order to better assess how racism impacts the full reproductive journey. I believe this information can help in developing practical interventions in the future that will impact innovation in business, policy, and practice.”
Dr. Tiffany Montgomery, PhD, MSHP, RNC-OB is an Assistant Professor in the Temple University College of Public Health, Department of Nursing. She studies sexual and reproductive health disparities, especially among Black people of childbearing age. As the co-chair of the National Black Nurses Association Women’s Health Committee and an advocate for nursing education, she publishes and presents on issues of diversity, equity, and inclusion in women’s health and nursing.
"My love and admiration for women led me to work on this project," says Dr. Montgomery. "We often believe that diversity work only impacts people of color, but I have seen how all people are impacted when we view health through an equity lens. I wanted to do my part to ensure Modern Fertility wasn’t inadvertently contributing to the lack of compassion for and understanding of minoritized individuals seeking assistance with infertility."
Evaluating our existing research surveys
Every Modern Fertility customer has the option to consent to our research, opting in to have their results anonymized and analyzed by our clinical team, so we can help push fertility science forward. The surveys shared with customers who opt-in range from period health to contraception and pregnancy outcomes. Our goal is to develop a better understanding of fertility to give people with ovaries more power over what impacts their bodies.
In collaboration with our clinical research team, Dr. Gaitors and Dr. Montgomery audited hundreds of questions — evaluating not only the questions we were asking, but the answers customers could select from and the word choice throughout.
Here's what we're updating based on recommendations from Dr. Gaitors and Dr. Montgomery:
- Expanding our demographics section to account for a broader spectrum of racial and ethnic groups, and more subgroups within each category so we can get as specific as possible in our reporting.
- Expanding questions about religious and cultural backgrounds (including religious upbringings) to better understand how this impacts feelings about fertility and outcomes.
- Adding a new section on physical disabilities, which will help us understand if people believe (or have been told) that their disability impacts their ability to conceive.
- Incorporating a universal metric used in OB-GYN called GTPAL (Gravity, Term, Preterm, Abortion, Living) to ask questions about pregnancy-related medical history.
- Removing mentions of "natural pregnancy." Word choice matters! We are replacing this phrase with “without the assistance of reproductive technology" to reduce stigma and promote the fact that all pregnancies are natural, no matter the mode of conception.
"Working on this audit reminded me how easy it is to overlook the unique lived experiences of people of color," says Dr. Montgomery. "If we aren’t careful, we can miss the opportunity to humanize people contributing to research. It’s important that all people feel seen and appreciated when we are conducting research."
Dr. Gaitors explains further: "Accounting for the nuance within racial groups is necessary. For example, Black people are not a monolithic entity. There are cultural differences and nuances to capture within Black communities and beyond. Family backgrounds, culture, religion, gender roles, and other social constructs are all very important — these factors truly shape how we interact with the world, especially as it pertains to our health care experiences, decisions, and outcomes."
Developing new survey questions to address systemic racism
We also collaborated on new survey questions to expand our existing survey, which account for experiences with racism and discrimination within OB-GYN and fertility care, broader community attitudes and beliefs on fertility, and cultural stigmas/taboos related to getting pregnant. Here's a closer look at the different sections.
Experience within the healthcare system while receiving general healthcare, OB-GYN care, and fertility treatments
What we ask: How people feel they've been treated by healthcare providers — including whether they felt like they were treated with less respect, or whether they believe providers have not listened to them.
Why we ask: To understand whether these experiences are isolated to different race/ethnic groups, and how they correlate to, or may be different from, feelings about fertility and pregnancy outcomes.
Example question: "In your experiences at a fertility clinic, do you believe a doctor or nurse has acted as if they think you are not smart?" (Never, Rarely, Sometimes, Most of the time, Always)
General knowledge about fertility and how it's discussed in various communities
What we ask: Questions related to getting pregnant and carrying a pregnancy to term, and how people are discussing this topic with anyone in their community.
Why we ask: To understand how conversations about fertility manifest in someone's life and whether more frequent contact with people who are willing to talk about fertility changes someone's feelings about their own fertility.
Example question: "Based on your experiences with your family and friend circles, please select the level of agreement with this statement: They believe everyone should be a parent.” (Strongly Agree, Agree, Undecided, Disagree, Strongly Disagree)
Cultural beliefs about pregnancy and parenthood
What we ask: How having children and becoming a parent relates to personal identities, and how personal religious beliefs influence decisions to pursue parenthood, whether (and why) biological children are a priority.
Why we ask: To understand the cultural factors that may shape someone’s fertility experiences and overall outcomes.
Example question: “Please select your personal level of agreement with this statement: My religious beliefs and practices influence my decisions to pursue parenthood." (Strongly Agree, Agree, Undecided, Disagree, Strongly Disagree)
Stigmas and taboos related to reproductive health, pregnancy, and infertility
What we ask: How feelings of embarrassment, shame, inadequacy, and judgment are related to infertility in our society, and how these feelings apply if someone experiences infertility.
Why we ask: To understand how shame and stigma play a role in people's fertility journeys.
Example question: "Please select your personal level of agreement with this statement: People who experience infertility often feel that their family and friends look down on them." (Strongly Agree, Agree, Undecided, Disagree, Strongly Disagree)
Access to care and fertility resources
What we ask: Which factors impact access to fertility care and resources.
Why we ask: To understand why fertility care is perceived to be available or not.
Example question: "Please state your level of agreement: I believe fertility treatment is available to all people who want it.” (Strongly Agree, Agree, Undecided, Disagree, Strongly Disagree)
We are so grateful for our partnership with Dr. Gaitors and Dr. Montgomery — they have been essential to this initiative and our broader mission. We're also thankful for Dr. Crear-Perry and Dr. Perritt’s initial guidance.
Dr. Crear-Perry adapted the guiding mantra that “racism, not race, causes health disparities," and our team unequivocally stands by this statement. Similar to our other research projects, which you can read about here, we are eager to publish our future findings in peer-reviewed journals and support the collective understanding of how systemic racism impacts fertility outcomes.
If you're a customer and want to contribute to this research, you can opt-in on your Modern Fertility dashboard.
If you're a researcher interested in studying racial/ethnic disparities in infertility, please get in touch by emailing research[at]modernfertility.com. We'd love to hear from you!