This snapshot (short summary of current research) comes from the FPG Child Development Institute at the University of North Carolina/Chapel Hill. It is a very interesting report that all pediatric practitioners should read, because it clearly shows the true impact of the internet for parents looking for information for genetic disorders.
One point from the article summary:
This study shows, however, that this knowledge no longer belongs solely to the professional. These parents may know more than most professionals about their child’s specific genetic disorder. They may have spent far more time doing the research and talking with other parents about optimal treatments and interventions, and come to see their role to be that of educating
service providers about what they have learned. In effect, they are "citizen scientists" who share authoritative knowledge with service providers and expect to be partners in decisions affecting their children.
Today's primary care providers, as well as specialists, are working in tandem with parents who are using the internet to find information. That is the reality. While this can sometimes lead to parents who obtain very questionable information--especially on treatments that go beyond "alternative" and into fantasy--it also leads to parents who have a great deal of quality information. It would be very wise to pay attention to what parents are learning outside of your practice with them. In fact, asking about the information they are learning should be part of your practice.
The truth is, for rare disorders particularly, parents who spend time looking for answers are oftentimes going to be your primary source of quality information. You just have to leave yourself open for learning genetic information from an informed layperson.
That's the hard part.
No, every parent who finds a support group and a bunch of web sites on the internet is not an expert.
But some are.
Not acknowledging that can be detrimental to your own practice. If you are trying to keep up with current information about rare disorders, keep an open mind about what parents bring you.