Disseminating scienceBMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7424.1174 (Published 13 November 2003) Cite this as: BMJ 2003;327:1174
- Alex Williamson, publishing director (firstname.lastname@example.org)
- BMJ Journals/Books
The Royal Society has convened a working group to look at how research reaches the lay media. Alex Williamson offers an insider view
Imagine this scenario. A group of university researchers gets funding to study the causes of a well known human genetic disease (disease X). Disease X is fatal in a small percentage of cases, but there is a range of effective, but expensive, treatments for its symptoms.
After six months of the four year study many of the patients who have been tested seem to have the same rare combination of changes in a particular gene. The researchers also discover that some of the patients with this rare combination of genetic changes also had the same rare childhood illness (illness Y). Illness Y is fatal in about a half of cases, and it is not known how to cure or prevent it. Illness Y produces very painful symptoms, for which there is no effective treatment. It was not previously known …