Who Gets to Read the Research We Pay For?; Slate, August 21, 2018

Aaron Mak, Slate; Who Gets to Read the Research We Pay For?: Scientific journals’ lock on new studies has ignited tension for years. When it comes to access for people with rare diseases, it becomes an ethical issue too.

"This does not sit well with academics and other members of the research community, who often publicly complain about the company’s profit margins, its allegedly restrictive copyrights, and the fact that much of the research it sells access to is taxpayer-funded. This public outrage seems to have gotten under the skin of William Gunn, Elsevier’s director of scholarly communications. When one user argued that people in rare-disease families “shouldn’t have to jump through additional hoops to access information,” Gunn responded, “Yes, everyone should have rainbows, unicorns, & puppies delivered to their doorstep by volunteers. Y’all keep wishing for that, I’ll keep working on producing the best knowledge and distributing it as best we can.”

This is just one reckless tweet in the heat of a Twitter spat (though it’s worth bearing Gunn’s job title in mind), and, sure, he later apologized. But the issue of rare-disease families trying to avoid the high fees associated with accessing research on potential treatments goes beyond this Twitter spat: It’s a real problem that has not been adequately fixed by the company."