Yesterday I saw a thread posted by a member of the general public, looking for advice for their child's medical issues. This thread has been deleted (I think), but I was able to read some of the commentary before it disappeared.
The community had some concerns about private medical information being revealed. And some concerns about seeking advice from strangers on the internet instead of qualified practitioners in real life. These are valid issues.
However, my point is more general. This may become increasingly an issue here as more people have (or hear about) sequence information, and want some advice for it. I think it is wise for this community to stay away from diagnosis. But I think we could offer these folks some guidance to appropriate resources.
Please have some compassion for the desperation that the parents of kids with undiagnosed conditions face. And keep in mind that their thresholds for privacy are not the same as everyone else, possibly. And understand that they are hearing stories about how familes connected with researchers who could help them from random internet forums. The most recent one I saw was this: Answers.
But other stories like this are widely read: How Genome Sequencing Creates Communities Around Rare Disorders.
Could we possibly have a place to point these families, like a thread that we can sticky or something? Where we can offer them connections to the Rare Disease sequencing projects, or genetic counseling resources, non-wonky information sources like Genetics Home Reference, or something? The international group here probably could collect a good set of pointers for people around the world.
I guess I'm asking for a constructive place for some guidance for families, and a policy about how to deal with those kinds of threads.
Open for discussion.