One of the hallmarks of medical genetics is non-directive counselling. Therefore, I was dismayed to read the case for selective paternalism in genetic testing in Wired’s Neuron Culture. In most cases, genetic tests only provide information and patients need to determine if they want the information and/or what to do with it. Genetic counsellors should help patients understand the impacts of the information.
I’m defining paternalism as a medical professional advising a patient on the best course of action. I’m a fan of medical experts telling a patient what to do when:
- It is best for public health. Examples: vaccines, reporting sexually transmitted infections
- There is an obvious treatment. Example: bone sticking out of arm after fall
- You can save a child’s life. Example: providing blood transfusions to children of Jehovah’s Witnesses faith
But medical genetic testing doesn’t usually fit into these categories and often provides difficult information without clear treatment.
One of the hardest things to teach the medical students is that genetic tests should be optional. Once you learn information, you can’t unlearn it. Pre-test counselling is important so patients can answer questions like, “Why do I want to know? How do I think different results would affect my life?”
Different people will make different choices in situations that seem the same to an outside observer. I will often ask a class/audience, a version of the following:
If I could tell you whether you would be alive in 15 years, would you want to know?
There is never a consistent answer. Some say yes, some say no, and there are always some who are unsure. (The proportions vary by audience type.) This highlights that we have different views for the same situation. It is not up to my doctor to determine what is best for me because our beliefs and support systems may be different.
Another scenario can underscore the problem of paternalism.
Do you want to know if your fetus has Down Syndrome? (Some will, some won’t.)
If you have the test and learn that your fetus has an extra chromosome 21 (Down Syndrome), what should you do? The options are all difficult: terminate the pregnancy, give the baby up for adoption, or raise a disabled child.
This is a personal decision, based on your feelings about the options, incorporating your support network, and other intangibles. The genetic counselling appoint should help patients what is best for them at that time.
I understand that people might want to protects their patients as Laura Hercher states. But how does my genetic counsellor or doctor know what I can handle? I think supporting patients to explore options and make their optimum decision is needed, not deciding for them.
Genetic counselling is an important profession and both pre and post counselling are valuable. I agree that 23andme results without context could be problematic and people should enlist the help of genetic counsellors, especially if they need help understanding the information 1. But genetic counsellors should not be guards of information but rather guides, helping patients make decisions.
- More about genetic counselling can be learned from this guide for general physicians. An excerpt: Genetic counselling is non-directive and aims to explain the facts as clearly as possible, giving the person or family accurate information on their options in a way which they can understand, and helping them make up their own minds. Genetic counselling should be regarded as an integral part of the genetic testing process and should be offered and strongly recommended in most genetic testing situations. ↩