Our Thoughts on Noninvasive Prenatal Screening (NIPS)
Remember the Girls is a nonprofit organization that supports carriers of rare, genetic X-linked conditions, and advocates for greater access to affordable and equitable family planning options.
We stand in support of the use of noninvasive prenatal screening (NIPS) as a valuable family planning tool. Here is our response to the recent New York Times article: “When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong."
While we empathize with the anguish and confusion that a false positive result on these screenings may cause, we feel it important to emphasize the importance of this screening from the perspective of our community. Giving birth to and raising a child with a seriously disabling or deadly genetic order can cause immense suffering and hardship not only to the affected child, but to the entire family. Parents should be afforded every available option to prevent or prepare for this situation.
We believe open communication, including genetic counseling, is essential before, during, and after the NIPS screening process to ensure all parties are informed which disorders are being screened for as well as the fact that a positive result does not mean that a particular disorder is present: just that further diagnostic testing is necessary to rule it out. Such knowledge goes a long way in helping to mitigate feelings of confusion and anxiety.
Additionally, Remember the Girls believes it is important for all healthcare providers who order and/or discuss prenatal screenings and tests to have a basic understanding of genetic risks. One way this can be achieved is through continuing medical education on the topic of genetic testing and screening, and more specifically NIPS.
Remember The Girls plans to create additional educational resources on family planning options including NIPS. We encourage anyone interested in pursuing NIPS to consult with his or her healthcare provider, and preferably a genetic counselor, to best understand the complexities of this process. Genetic counselors who conduct in-person meetings or via telehealth can be found at https://findageneticcounselor.nsgc.org