Ein conversation with Marion Janke, doctor, behavioral therapist and managing director at pro familia Stuttgart, as well as head of the information and networking center for prenatal diagnostics in Stuttgart.
Miss Dr. Janke, who enlightens pregnant women about prenatal diagnostics?
We have to distinguish between two perspectives here: that of the resident doctors and the counseling centers. The doctors in private practice are obliged to inform about prenatal diagnostics – there is a so-called information for insured persons, which is very extensive. Especially when doctors offer non-invasive prenatal tests, they also have to inform about it. This includes: What can the test achieve? What kind of result can come out? What significance does such a result have?
And what is your role in a profamilia counseling center?
Our focus is not on medicine, technology or the expected child, but on the pregnant person, the family, the couple. We deal with the motivation, the fears and concerns as well as ethical challenges around prenatal diagnostics – that takes time. In early pregnancy, there is a huge list of things that doctors are required by law to discuss with pregnant women: infectious diseases, vaccinations, risks in previous pregnancies, and many more. There is often a lack of time to go into detail about prenatal diagnostics. In addition, prenatal exams are complex and difficult to understand. Some pregnant women find it difficult to understand the information sheets or have language difficulties. Communicating complex content such as prenatal diagnostics in such a way that the pregnant person really understands what it is all about takes time.
From July 1, 2022, non-invasive prenatal tests (NIPT) will be covered by statutory health insurance companies. Do you expect this to result in a greater need for clarification?
I expect more uncertainty among the pregnant women, both as to whether they want to carry out the test and as to the result. This is also due to the fact that the indication for the test – i.e. the reason why it is carried out – is very vague. On the one hand, pregnant women have the costs covered if there is a preliminary finding or risk. On the other hand, the pregnant person can also decide to have a test in agreement with the doctor, for example if they are very afraid. There’s a lot of room for interpretation there. That is why clarification is all the more important. The resident gynecologists must first be informed in detail about NIPT. Further training with practical tips for advice is planned. The resident physicians should be made aware of how they can handle NIPT and the indication for the test carefully.
How does psychosocial counseling come about in the event of a positive finding?
When doctors transmit the result, they are legally obliged to refer to the additional psychosocial counseling. Sometimes there are doctors who give extensive advice and take the extra time to do so. For many pregnant women, medical information is enough and they feel able to make a decision with the support of their social environment, even without psychosocial advice. In general, there are very few who take advantage of additional psychosocial counseling.
Why is that?
The entire procedure of prenatal diagnostics, especially when a finding or a diagnosis is available, has a strong momentum of its own. One test is followed by the next. This is also the case with NIPT: If the result is positive, the invasive prenatal diagnosis comes up. If the result is confirmed, there is an interview with the prenatal diagnostician or geneticist. That means a lot of appointments. The whole situation is extremely stressful. And then an additional psychosocial consultation – another appointment – many people don’t do that anymore.