It is not just worthy sites such as the NEHL that are troubled by this argument. Look at the chat rooms on health sites for instance. Much of what is posted is banal banter and gossip, just as it is in every other chat room. It would surely be unthinkable to find bad information on a government website. So the alternative is some form of screening.
Patient groups think the same way.
But the implicit censorship sticks in the craw of the internet purists. On the credit side, the internet has been fantastic for those who have been isolated or cut off from information they need, such as families whose children suffer from very rare diseases. In the UK, an organisation called Contact a Family has been up and running for 20 years. Its aim is to bring those isolated families and the doctors and nurses who work with them together to pool their information and support each other. The internet has transformed their lives and their hopes.