An important priority for Genetic Support Foundation (GSF) is to develop and share educational resources about genetics and health that include up-to-date, fact-based information that is free of commercial bias. With this in mind, GSF has developed numerous helpful videos related to genetics and health, all of which can be viewed on our website. Many of our healthcare partners use these videos in their practices and they are accessed and viewed by individuals throughout the United States and internationally.
Prenatal genetic testing should not be routine
Patients have a growing list of prenatal genetic screening and testing options to consider. What tests to undergo, or whether to have testing at all, should always be a personal choice, informed by the personal needs, values and preferences of the individual. Some people may feel that prenatal genetic testing would provide information that could be helpful, while some may feel that the information that may be learned from genetic testing may cause stress and worry and would not change their pregnancy care.
While decisions around prenatal genetic testing are very personal, they are often presented as routine. Unfortunately there are many factors that work against supporting informed decisions in prenatal care. For one, obstetrical care providers have much to cover in their visits with patients and are under significant time pressure. There is often insufficient time to have a nuanced conversation about the potential risks, benefits and limitations of a growing list of genetic testing options. There is also increasing marketing to patients and providers that highlight (and in some cases overstate) the benefits and downplay any concerns or drawbacks of the testing.
Valuable (and free!) resources for your practice
Recognizing the need for objective resources that could help supplement the information provided during a brief prenatal care visit, GSF has created a series of short videos on specific topics related to prenatal genetic testing through a partnership with the Washington State Department of Health. These videos include:
- How to Decide about Prenatal Testing
- Conditions Commonly Screened for In Pregnancy
- Prenatal Ultrasound
- Prenatal Cell free DNA Screening
- Maternal serum analyte screening
- Chorionic Villus Sampling
- Amniocentesis
All of these videos are freely available and Spanish versions of these videos are also available.
More recently GSF produced an educational video on carrier screening and will soon release a Spanish language version of this video as well.
Research shows adding GSF videos to prenatal care supports informed patient decisions
GSF worked with physician researchers at Naval Hospital San Diego to conduct trial in which pregnant patients were randomized to either undergo usual care which included counseling about prenatal genetic testing by their OB care provider alone as compared to a group who watched the How to Decide about Prenatal Testing prior to counseling by their OB provider.
Patients in the video education group showed higher:
- Greater knowledge about prenatal genetic testing
- Lower decisional conflict scores
- Lower decisional regret
Patients who were randomized to the video group also had a lower rate of uptake of prenatal genetic testing which suggested that they were more actively engaged in making a choice about the offer of testing rather than accepting testing as routine.
This standardized video can be easily implemented in clinical practice to increase patient understanding and support decisions that align with patient’s values.
Tools for your practice
Have you used these videos in your practice? We know of clinics who have these videos loaded on to tablets that they ask patients to view when they attend their first prenatal visit. Others have links on their clinic website where they direct patients to view prior to coming for their first prenatal care visit. One health system has integrated these videos into a platform that walks patients through options and documents patient preferences and consent for testing. We’d love to hear from you if you have used these videos in your practice or if you have ideas for videos that would be helpful for us to consider for future projects. Get in touch, we’d love to hear from you!