CHICAGO – Oct. 1, 2023 – All obstetricians (OBs) recognized that there is a genetic component to preeclampsia – a potentially deadly complication of pregnancy that affects many more pregnant people who identify as African American than those who identify as white – but only 60% believed the results of testing would change the treatment strategy, according to results of a survey being presented at the National Society of Genetic Counselors (NSGC) 42nd Annual Conference.
The researchers surveyed pregnant people who had preeclampsia during a previous pregnancy and found all of them would be willing to receive genetic testing for preeclampsia in future pregnancies.
The results of this survey should prompt a conversation between genetic counselors and obstetricians about the benefits and limitations of genetic testing for preeclampsia, while broadening the idea of how genetic counseling and genetic testing can help with the diagnosis and treatment of the condition, researchers noted.
“Genetic testing for preeclampsia could help improve outcomes by prompting providers to be proactive with treatment,” said Miavonna R. Craig, MS, a prenatal genetic counselor at Baylor College of Medicine at Christus Children’s, San Antonio, Texas. “Research is still being done to identify genes that may impact the severity of preeclampsia. Although it is too early to recommend that OBs offer genetic testing for preeclampsia to all pregnant people who identify as African American, they should definitely tell these patients about their higher risk based solely on their race.”
Preeclampsia usually develops after the 20th week of pregnancy and leads to high blood pressure, protein in the urine, possibly organ failure. It occurs in about one in 20 pregnancies in the U.S., and individuals identifying as African American are 60% more likely to suffer from preeclampsia than people identifying as white, according to the Centers for Disease Control and Prevention (CDC). If it’s not treated, it can develop into eclampsia and the parent and/or fetus could die, or the baby could be born too early. There are known genetic variants that can increase a woman’s risk of developing preeclampsia.
While genetic testing for preeclampsia is available, some insurance companies may not pay for it, and physicians often don’t order it because they don’t feel comfortable interpreting the results.
The researchers surveyed 29 health care providers, including obstetricians and maternal fetal medicine specialists, although not all answered all 19 questions. Of the 16 who answered the question, all (100%) said they believe that preeclampsia has a genetic component. Of the 18 who answered the question, all (100%) said it affects races and ethnicities differently. Of the 20 who answered the question, 18 (90%) said they would consider moving forward with genetic testing if it were available and could predict an increased risk of developing preeclampsia, and 12 (60%) said results would change their treatment strategy.
“Those who did not recommend genetic testing for preeclampsia said they did not believe it would change treatment plans,” said Craig. “Those who were open to it thought that it could justify them making changes to treatment, such as prescribing low-dose aspirin early in the pregnancy.”
Additionally, the researchers surveyed five patients who had been diagnosed with preeclampsia in a previous pregnancy, four of whom identified as white and one who identified as African American. All of the patients (100%) said they were willing to have preeclampsia-related genetic testing, hoping that it would change their past traumatic experience. The African American patient lost her baby as a result of having preeclampsia, and said she almost died as well.
Pregnant individuals who have previously had preeclampsia or know they have a genetic risk should inform their obstetric care providers as soon as possible. Their provider might recommend increased monitoring or taking low dose aspirin, and let the patient know what signs of preeclampsia to watch for, including high blood pressure, vision changes, headache and nausea.
“Tori Bowie, an African American Olympic athlete recently died from respiratory distress and eclampsia. The sad truth is that preeclampsia and eclampsia along with other complications are killing African American mothers at an alarming rate,” said Craig. “Patients need to have a say in their care as much as the providers in charge of the care – it takes all parties working together. Hopefully this research will let people know that there are options for pregnant people, including getting tested for a genetic risk of preeclampsia.”
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About the National Society of Genetic Counselors
NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents more than 5,000 masters-level health professionals, who are committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.