Dr. Norton is Professor and Vice Chair, Clinical and Translational Genetics, and David E. Thorburn, M.D. and Kate McKee Thorburn Endowed Chair in Perinatal Medicine and Genetics, University of California, San Francisco.
These 11 statements to guide decision-making with patients can help patients fully consider their values and preferences in regard to prenatal testing.
The prenatal genetic testing landscape has expanded significantly. For some women considering testing, it may be helpful to complete a decision aid.
These 11 statements to guide decision-making with patients can help patients fully consider their values and preferences.
1. I would want to know if my pregnancy is affected with a genetic condition or congenital anomaly.
2. I want the most information available about my baby and my pregnancy, even if there is a small risk associated with obtaining that information.
3. I would not have a test that could cause miscarriage of pregnancy, even if the chance is very small.
4. I would end a pregnancy if affected by a genetic condition or congenital anomaly.
5. I want information about my pregnancy before sharing the news with my friends or family.
6. I have more anxiety worrying about the possibility that my baby may have special health needs than if I knew for sure and could prepare.
7. I do not want a test that would tell me if I have a genetic condition.
8. I would rather know before birth if the baby has a genetic condition or congenital anomaly.
9. I want to get as much information about my pregnancy as I can before having diagnostic testing.
10. I value information that is more precise for a smaller number of conditions (such as Down syndrome) rather than less precise information about more conditions.
11. The cost of the testing options could influence my decision.
For more information on genetic testing: New tools for counseling on prenatal genetic testing