Who gets to read the research taxpayers fund.

"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.

There’s one field that has stubbornly ignored the changes in access to information that the internet has wrought: scientific publishing. Peer-reviewed research, often funded at least in part by taxpayers, is still difficult to access, as it’s almost entirely published in scientific journals that sit behind some of the priciest paywalls imaginable. This is frustrating for many people who want to keep up with the latest research, but it becomes an ethical issue for people who suffer from rare diseases and somehow still don’t receive easy access to the latest research on their conditions. This fault line erupted into an earthquake of sorts last week. The director of scholarly communications at Elsevier, a scientific publishing giant, kicked up a storm on Twitter during a debate over rare-disease families’ access to medical research. Elsevier has been a source of controversy on and off for the past few decades for what some see as business practices that place prohibitive costs on scientific information. Nearly 40 percent of the company’s income last year was profit...."