Sista-Sis Biodoula Services

Concept sketches and renders, Sista-Sis

Black women have the highest mortality rates of all women during pregnancy. We know that about 60% of these deaths are considered preventable, so why are so many Black women still dying? The reason is complex and has to do with decades of systemic racism and prejudice (1).

Structural racism in health care and social service delivery means that African American women overall receive poorer quality care than white women. This is reflected in less access to quality healthcare, interactions with biased healthcare professionals, algorithmic bias, and a higher rate of underlying chronic conditions (2).

We are experiencing a maternal health crisis in the United States that doesn’t affect all women equally. In fact, Black women are three times more likely to die from a pregnancy-related cause than White women. Upset by this statistic, our team began this project by exploring how we might provide better support for African American mothers going through childbirth (3).

 

Meet the Team

Tahjae, Jessica, Michael, and Sanaa are teens from Paul Robeson High School in Philadelphia, PA.

Robeson offered the Biodesign Challenge as an extracurricular opportunity, and these four honors students were chosen to participate, becoming one of two finalist teams for the Ginkgo Prize for Biological Futures.

 

Doula care

While researching existing systems for assisting Black mothers during childbirth, we came across the doula figure.

DONA International, a leader in evidence-based doula training, certification, and continuing education, defines a doula as “a trained professional who provides continuous physical, emotional and informational support to a mother before, during, and shortly after childbirth to help her achieve the healthiest, most satisfying experience possible.”

Doulas offer continuous support to moms during the entire length of labor and beyond, compared to doctors and midwives who may not be as accessible or present. Popularized in the 80s, these birth workers traditionally occupied a prominent position in African American communities, serving as healers and spiritual leaders, and maintaining extensive social networks (4).

Doula-assisted mothers are (5):

  • 4x less likely to have a low birth weight baby

  • 2x less likely to experience a birth complication involving themselves or their baby

  • Significantly more likely to initiate breastfeeding

Our goal from the beginning was to create a project that helps women of color feel safe, healthy, and heard when they have a medical interaction.”

 

Community-based doula models

After learning how important doulas are in the Black community and how much of an impact they have on healthy pregnancy outcomes, we began to research models for implementing doula care.

We found that states like New York have already begun creating policies that offer financial support to cover doula care costs, but there are some limitations to their approach. To be successful, “community-based” doula approaches can be incorporated. Community-based approaches extend beyond those of the traditional doula model (e.g. “private-pay” doula care), which does not address many of the issues of clients with complex social needs (6).

Community-based doula programs and organizations:

  • Exist within the communities they serve

  • Provide more home visits and a wider array of services

  • Provide low or no-cost support

  • Provide additional training

After speaking with the founder of such a program, we were inspired to imagine what a community-based doula model could look like 50+ years into the future.

 

Project conceptualization

As the students continued their research, they realized something. If the trend of high mortality rates in Black mothers continues to rise, we could end up living in a world where it is actually safer for African American women to give birth outside of a hospital, away from a healthcare system that is statistically worse for them than White women.

In such a reality, doulas may seek to accelerate existing efforts to support Black mothers during pregnancy, birth, and the postpartum period. We imagine that in the decade 2080, technologically advanced doulas, now called “Biodoulas”, have harnessed biotechnology to provide support for Black mothers during childbirth that is both holistic and cutting-edge.

We wondered what the potential of a trained workforce of “full-spectrum doulas” could look like and how this workforce could help address health inequities within underserved communities.

Sista-Sis is a speculative, community-owned Biodoula service for African American childbearing women. Biodoulas not only provide informational, emotional, and spiritual support for women, but they also provide physical support in the form of mRNA therapies developed and distributed within our community.

Biodoula concept sketch

 

During the Covid-19 pandemic, mRNA technology came to the forefront as a solution that is effective, easily created, inexpensive to produce, and scalable. In addition to vaccines, mRNA has also been used to treat several health issues including cancer (7).

Sista-Sis mRNA therapies treat cardiovascular issues such as cardiomyopathy and fight off infections such as bacterial vaginosis, by programming cells to produce specific proteins.

The process of developing such a biotherapy is simple:

First, we sequence a healthy mother’s genes responsible for fighting off either cardiovascular diseases or infections. Then, our researchers determine the specific code in the DNA that tells the cells to produce the protein we're looking for. We then build and synthesize the mRNA in preparation for testing. Finally, we run an experiment and evaluate the results. When we find something that is both safe and effective, the mRNA is purified and enclosed in a lipid nanoparticle so that it can later be injected (8).

 

Sista-Sis mRNA biotherapy concepts (Renders by Marco Locatelli)

One of the things that was important to us while building this project, was to design something that solved, or at least attempted to solve, the mishandling of the medical data of African Americans. We come from a long history of Black contributors to medicine, such as Henrietta Lacks, who were unethically siphoned for their biological information.

Sista-Sis aims to break this cycle by making sure that the mothers who contribute to our community are involved in the process of our research. When moms decide to share their DNA via a small blood sample, it is sequenced and stored in our database. At that point, it is only accessible to donors and our most trusted researchers. As time passes and Sista-Sis acquires more sequences from pregnant women of color, the treatments for the community continue to improve in a safe and transparent way.

 

Students visit Integral Molecular to discuss mRNA therepeutics

 

One thing that came up during conceptualization was how the research and findings generated by Sista-Sis could be passed down from generation to generation in order to enrich the community’s knowledge. We researched different methods like singing, dancing, texts, art, sculpture, and oration. Eventually, the team decided that this future community would hold a ceremony of song to pass down wisdom to the next generation of Biodoulas.

Singing as a form of communication is deeply rooted in the African American culture. It began with the African slaves who were kidnapped and shipped to the Americas, who used singing as a way to communicate and even search for lost family members during the voyage across the Atlantic. These songs were influenced by both African and religious traditions and would later create the foundation for what is now known as “Negro Spirituals” (9).

We asked, “What if doulas could develop and pass down unique biotherapies to the next generation, leveraging the experiences of Black mothers to enrich the community over time?”

 

Conclusion

At the beginning of this program, four teens set out to create a project that addresses how we might provide quality healthcare, tackle implicit bias in professionals and algorithms, and address underlying chronic conditions for people of color. But the project evolved into so much more than that, with implications that could potentially be beneficial for society:

  • A community-based Biodoula model like Sista-Sis would generate valuable data on Black women that could be used for research and the development of unique biotherapies created specifically for them

  • Our therapies would result in a decrease in deaths of African American mothers and babies, resulting in an increase in the population of Black people who are now only 12.4% of the U.S. population

  • And monetary compensation for mothers who contribute biodata (data dividends) could set a new standard for data ownership expectations and could act as a new kind of financial model for low-income mothers and their families.

This project was never meant to be the perfect solution for combating Black maternal mortality, however. We have discussed as a team that there would likely be pushback and repercussions if Black women began to remove themselves from the general medical community. But this project is not meant to separate, rather its goal is to bring black mothers out of isolation and reconnect them with their community and rich history of self-healing, empowering them to take charge of their own health and allowing them to be less reliant on a biased healthcare system.

Sista-Sis is not a call to action for “White America” to stop overlooking the ripple effects of racism still experienced by Black people today. It is a call to action for Black people to take advantage of emerging technologies and to invest in their own well-being.

Want to get involved?

https://trustwomen.org/take-action/contribute

https://trustusjustice.org

https://secure.actblue.com/donate/kcfweb 

 https://secure.actblue.com/donate/txfunds

Thank you!

 

Reference List

  1. Hoyert DL. Maternal mortality rates in the United States, 2020. NCHS Health E-Stats. 2022. DOI: https://dx.doi.org/10.15620/cdc:113967

  2. President, Julia Cusick Vice, et al. “Eliminating Racial Disparities in Maternal and Infant Mortality.” Center for American Progress, 5 May 2022, https://www.americanprogress.org/article/eliminating-racial-disparities-maternal-infant-mortality/.

  3. “Working Together to Reduce Black Maternal Mortality.” Centers for Disease Control and Prevention, CDC, 6 Apr. 2022, https://www.cdc.gov/healthequity/features/maternal-mortality/index.html.

  4. Hunter, Ryan. “The Historical Significance of Doulas and Midwives.” National Museum of African American History and Culture, 24 Mar. 2022, https://nmaahc.si.edu/explore/stories/historical-significance-doulas-and-midwives.

  5. Gruber, Kenneth J et al. “Impact of doulas on healthy birth outcomes.” The Journal of perinatal education vol. 22,1 (2013): 49-58. doi:10.1891/1058-1243.22.1.49

  6. Bey, Asteir, et al. “ADVANCING BIRTH JUSTICE: Community-Based Doula Models as a Standard of Care for Ending Racial Disparities.” Ancient Song Doula Services, Every Mother Counts, 25 Mar. 2019, https://www.ancientsongdoulaservices.com/_files/ugd/f36f23_ff3430a59a4f43c6aee29ef61ab7a185.pdf.

  7. Hoerr, Ingmar. “Enabling the Body to Manufacture Its Own Medicine.” GEN News, 31 Oct. 2018, https://www.genengnews.com/insights/enabling-the-body-to-manufacture-its-own-medicine/.

  8. Sartorius. “MRNA Production.” Sartorius, https://www.sartorius.com/en/applications/biopharmaceutical-manufacturing/mrna-production.

  9. Berry, Kenyatta D. “Singing in Slavery: Songs of Survival, Songs of Freedom.” PBS, Public Broadcasting Service, 25 Jan. 2017, http://www.pbs.org/mercy-street/blogs/mercy-street-revealed/songs-of-survival-and-songs-of-freedom-during-slavery/#:~:text=Music%20was%20a%20way%20for,Col.

Genefer

Genefer is an artist, designer, and facilitator at Aula Future.

http://genefer.art
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