As part of our five-part series on Making Black Lives Matter In Health Care, we seek to uncover facts and share insights on the racial disparities impacting health, with a particular focus on the role of genetics and genomics. By bringing light to these issues, we hope to be a part of the solution to address these inequities and improve health outcomes for all.
In the first installment of this series, we highlighted that non-white people who are pregnant are more likely to have pregnancy complications and pre-term delivery and are more likely to die after delivery. In fact, Black mothers die at a rate of 2.5 times that of white women (37.1 Black women per 100,000 compared to 14.7 white women). Additionally, their infants are more likely to die in the newborn period. Even those who would seem to have every advantage in their pregnancy-related care may be at risk. In the words of journalists Nina Martin and Renee Montagne in their story on the death of former U.S. Public Health Service lieutenant commander Shalon MauRene Irving, “Nothing protects Black women from dying in pregnancy and childbirth. Not education. Not income. Not even being an expert on racial disparities in health care.”
Although pregnancy and childbirth can be a joyful and exciting time, these stories and statistics are stark reminders that there are also risks that must be considered and that reproductive rights are critical for all before, during and after pregnancy. “Reproductive rights” is a broad term. It refers to the ability of people to freely make informed decisions about how, when and if to have children. It also speaks to everyone’s right to have access to standards of care, education and information, including the availability of genetic counseling and testing. A discussion about reproductive rights can’t occur without recognizing the troubling history of eugenics in specific communities. As explained by the Personal Genetics Education Project, “eugenics is the philosophy and social movement that argues it is possible to improve the human race and society by encouraging reproduction by people or populations with “desirable” traits (termed “positive” eugenics) and discouraging reproduction by people with “undesirable” qualities (termed “negative” eugenics).” Marginalized communities, including Black, Indigenous, Latinx and other people of color, have long been the victims of eugenics and denied their full and equal reproductive rights.
Examples of this can be seen across the U.S. and throughout history:
- For more than 40 years (1929-1974), North Carolina ran a state-sponsored sterilization program, permanently ending a person’s ability to have children, and 40% of the 7,600 individuals who were sterilized were Black or Native American. A Duke study revealed that unemployed Black people were targeted to “breed (them) out.” North Carolina was not alone. More than 30 U.S. states had sterilization laws in effect.
- In 1937, in the U.S. territory of Puerto Rico, a law was passed that promoted the permanent sterilization of poor women. Although the law was repealed in 1960, a 1976 report by the U.S. Department of Health, Education and Welfare found that “that over 37% of women of childbearing age in Puerto Rico had been sterilized. The vast majority were in their twenties.”
- Under the Family Planning Services and Population Research Act of 1970, “perhaps 25% of Native American women of childbearing age [were sterilized], and there is evidence suggesting that the numbers were actually even higher.”
There are many more historical examples, and abuses continue to exist today. People are still intimidated and incentivized to make decisions about birth control and family planning that significantly limit or eliminate their ability to have children - a significant enough issue that the American College of Obstetrics & Gynecology has a position statement opposing these practices that specifically acknowledges that they are often driven by bias. And just this month, a nurse at a U.S. Immigration and Customs Enforcement facility in Georgia filed a whistleblower complaint alleging multiple medical abuses, including women who received hysterectomies without proper consent, which is now under investigation.
Genetic counseling and testing is recognized as a critical part of the ethical management of patients who seek to become parents. In this context, genetic counseling and testing can help individuals and families gain valuable information about the risks of serious genetic conditions for existing and future pregnancies, identify the causes of infertility and improve the success of fertility treatments such as in vitro fertilization (IVF), and guide medical management before, during and after a pregnancy for a multitude of conditions for both mother and the child.
However, given these past and present experiences, it is easy to see why people - particularly those from marginalized communities that have seen and suffered abuses related to reproductive rights - have a justified mistrust of the medical community, testing options and other interventions related to their pregnancies. It is up to us, as health care providers, to understand their concerns, help them learn about the options that they have for medical and genetic services, including genetic counseling and testing, and how those options may support their desires and values.
There is a direct and materially limiting impact to reproductive choice and freedom for marginalized groups who are not offered equal access to medical and genetic services, including genetic education and testing options, of equal quality. Every person and every couple, has the right to insight and knowledge about their current or future pregnancies.
What actions can you take if you are a clinician?
- Create an environment and system where all patients are informed about and offered the same menu of genetic and genomics tests. Recognize unconscious bias in and remove phrases like “Black patients don’t...” or “Latinx patients won’t...” from your assessments. Don’t make assumptions about one’s ability to pay or insurance coverage; patients deserve equal education and information so that they can make an independent decision based on their priorities and beliefs.
- Advocate for insurance coverage that provides access to testing of equal quality and benefit, like expanded carrier screening.
- In order to create equity across different patient populations, we must recognize that due to historical abuses and systemic racism, additional work and different approaches may be needed for some patients to overcome their concerns and fears to truly make an informed decision. Hold time and space to have a conversation with your patients about these issues and consider how such information may impact their thoughts about pregnancy and having children, regardless of whether they choose genetic services or not. Invite them to share their concerns, doubts, distrusts and other reservations about genetic testing, as these abuses are not only happening today, but may have happened to their parents, grandparents, family or friends.
What actions can you take if you are a patient?
- Be your own advocate. Educate yourself about what the standards of care are prior to, during, and after your pregnancy. Know what genetic services and testing options are available to you before and during your pregnancy. This information can be overwhelming and hard to understand, so ask your health care professional to explain it. This is what they trained for and they are there to work for you.
- Advocate for insurance coverage of these services. You can contact your employer’s benefits group, your physician, and your insurance company to get answers about coverage. We hear consistently from insurance companies that people aren’t asking for a specific test. This is likely because the patient’s expectation is that it won’t be paid for or that the patient is unaware of their rights and options. If the insurance company says no, you can fight that decision and add to the collective voice that equity matters!
- If you are thinking of having a family, and are interested in learning about the potential benefits of meeting with a genetic counselor and exploring genetic testing, visit Genome Medical’s Reproductive Genetics page.
And everyone can take the action of educating themselves about the history of eugenics and the ongoing impact on reproductive rights. The Eugenics Archives and Personal Genetics Education Project (pgEd) are just a few of the resources that have extensive and deep information available online.
Read the first installment of this blog series, Making Black Lives Matter In Health Care: First in a Five-Part Series.
Learn more about Genome Medical’s commitment to being a Force for Good and how we are taking action, speaking out, and serving as agents for change to actively dismantle social injustice, systemic racism, and inequality.
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