Worried about genetic testing? Do this first

Overview of genetic testing

Genetic testing is a very personal choice for you and your partner. In addition to considerations such as age, ethnic background, and health history, all of which influence potential genetic concerns for your baby, these decisions are also intertwined with your emotions and your personal values.

The process of approaching whether or not to do none, all, or some of the available tests for helping determine the likely genetic outcome of your child is a question-and-answer process that is unique for everyone. There is no right answer, only what is right for you. So, to help guide you toward knowing more about what is

right for you, here are some questions designed to give you the freedom to explore the possibilities. I also recommend, if applicable, sharing this exercise with your partner so that you can compare notes and arrive at a decision that is mutual and involves both of your beliefs, hopes, and desires.

A guided exercise for tackling questions around genetic testing

Take at least ten minutes for each question and write about whatever comes up for you when posed with each question.

1. Are you comfortable with relatively noninvasive prenatal testing (NIPT), which is a blood tests and ultrasound to gain a starting place for determining how to proceed with further genetic testing?
2. Based on the information above, if you got borderline/inconclusive information back, would you desire more conclusive information even if it carried a small risk to the pregnancy itself (amniocentesis or chorionic villus sampling)?
3. If you found out your baby had a genetic abnormality, would you consider terminating this pregnancy?
4. If considering retaining your pregnancy in the face of an abnormal finding, do you feel that some genetic abnormalities are more tolerable than others?
5. Are there any circumstances under which you would absolutely not terminate?
6. Are there circumstances under which you would absolutely terminate?
7. How do your feelings or instincts about your pregnancy match up to what 
you think you should do?
8. If there are any discrepancies in the above questions, are there any 
bridges between these different feelings and thoughts?

Take a few minutes to reflect on your answers, and perhaps share with your partner—knowing that this is the foundation of a conversation that may change in the upcoming weeks as you near the time to make each of these choices. Set aside a time for yourself once a week to review these questions, alone or together, and see if anything changes for you. Allow yourself and each other to be the guides for the parenting that is right for your unique family. A genetic counselor can be a great resource for you as well to effectively weigh the risks and benefits of your decisions.

Science has made it possible for us to find out a lot about a baby long before it is born. However, it’s important to remember that science isn’t perfect and there is still a lot we do not know. And needing to know the answers at a time when it is not always possible to get them is a direct recipe for suffering. So, I like to emphasize both relying on scientific information and also touching in on your own truths as you make decisions about your pregnancy and which tests to conduct.