By Rachel Troy, Communications and Graphic Design Intern.
As new prenatal genetic screening and technologies become rapidly available, prospective parents may feel overwhelmed by the sheer number of choices. In a Maternal Health Network meeting hosted by the Society for Women’s Health Research (SWHR) in April 2023, Katie Stoll, MS, LGC, executive director of the Genetic Support Foundation (GSF), stated that educational and decision support tools are needed to counter the routinization of prenatal testing that has occurred due to an increase in options, marketing, and time sensitivity in the industry.
To counter this routinization, Stoll presented on how animated educational videos created by the GSF, in partnership with the Washington State Department of Health, have encouraged informed decision-making for parents considering prenatal genetic screening options.
These resources include the GSF Prenatal Genetic Testing Videos series and the follow-up study “A Randomized Controlled Trial on The Effect of Standardized Video Education on Prenatal Genetic Testing Choices: Uptake of Genetic Testing.”
When creating the informational videos, Stoll explained that her team utilized language that emphasized the voluntary nature of genetic screening, allowing patients to make informed and active decisions that are best for their individual values, interests, and goals. Of note, the videos aimed to maintain neutral word choice. “There’s a fine line between marketing and education,” Stoll said, explaining her team’s intentional word choices of “condition” rather than “defect” or “abnormality,” and “chance” rather than “risk.” Such words can help to reinforce the message that there is no one “right” choice when it comes to genetic screening, only the right choice for a particular patient. To ensure the videos—and their complex health contents—were inclusive to a wide audience, Stoll’s team also used a lower grade reading level, made all videos at or shorter than six minutes, and translated the video series into Spanish.
In measuring the success of the videos, Stoll’s team found that participants who viewed a 5-minute clip on genetic screening experienced less decisional conflict and were more knowledgeable on prenatal testing options than participants who were not shown the video. Test uptake was lower among participants who were shown the video, indicating the impact that education plays in shared decision-making.
SWHR has created many educational resources on maternal health, which also promote patient-provider communication and informed decision-making. Recently, SWHR:
- Developed a pair of patient and clinician fertility guides
- Hosted a fireside chat with a genetic counselor to discuss the impact of noninvasive prenatal screening on fertility health care
- Published a Noninvasive Prenatal Screening Resource Guide for Women
- Created a genetic screening poster for health care offices
- Became the administrative home of the Coalition to Advance Maternal Therapeutics, which aims to better understand the safety and efficacy of drugs, therapeutics, and vaccines used during pregnancy and breastfeeding
SWHR is committed to continuing its maternal health work with partners like the GSF and providing accessible educational materials that promote and prioritize informed decision-making for women and their families. As the maternal and prenatal screening and diagnostics landscape rapidly advances and increases in complexity for patient decision-making, patient- and provider-friendly support tools will be even more important in promoting and maintaining positive health outcomes for women and their families. When families – and providers – are better informed, they are positioned to live much healthier lives.