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.

A stack of papers in manila envelopes chained together.
Photo illustration by Slate. Photos by Thinkstock.

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.

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.

Elsevier mainly handles logistics for journals, such as coordinating the peer review process, formatting, distributing, and archiving. In exchange, the company is granted ownership of the copyrights to the articles and can thus charge fees for access. A yearly journal subscription can cost $5,000. The price of a single article is usually around $35. Universities are typically willing to pay these steep fees for their faculty and students. But if you aren’t in academia and don’t subscribe to the journals (and almost no individuals do), how do you access information? Elsevier sent Slate the following statement:

We at Elsevier care deeply for those in need of critical medical information and want them to be able to access it so we’ve developed a wide variety of free and low-cost options. We’re also always open to new ideas, and expanding others, for example offering the option for patient organizations and charities to contact us with article requests. Details on our more than 30 free/low cost options are here.

Elsevier does suggest a range of options for people who are unable to afford its fees at that site, such as visiting a library with a subscription (probably an academic library, and you’d need to find one that will let in members of the public), searching through free databases like PubMed, or emailing the authors of the pieces themselves to see if they will provide a copy without charge. Critics contend that these workarounds are laborious and time-consuming. Charles Oppenheim, formerly the head of the department of information science at Loughborough University, wrote to Slate, “In practice there are insuperable barriers for families that only true open access can resolve,” pointing out that, for example, time and distance barriers often make it impractical for people—perhaps particularly people who have rare diseases—to travel to a library that has the appropriate subscriptions. Free databases like PubMed also do not always contain the latest information on uncommon diseases and often only make the abstracts available. “[Elsevier’s] low-cost options are a joke, and breadcrumbs from a rich man’s table,” Jon Tennant, a paleontologist and open science advocate, told Slate. “Paywalls to health research are an abomination. No one should have to spend $30 each for 20 papers just to see if it has the information they want.”

Academics have proposed a number of open access models that would more freely distribute research data and journal articles, which could allow authors to post their work on websites for free so that anyone with an internet connection can access it. Tennant notes that open access has been the default status in various Latin American countries for decades. The European Union is also currently attempting to achieve open access for all scientific publications by 2020, and has developed a policy platform with recommendations to achieve that goal. However, Tennant points out that Elsevier has been appointed as a subcontractor for the project, which is concerning because of conflicts of interest and the fact that the company has previously lobbied for bills that would hinder the spread of scientific information.

In the U.S., however, rare-disease families who can’t afford subscription fees still have to navigate a variety of gatekeeping mechanisms in order to access research that could help them make critical health decisions. Only people who have time to spare and know exactly what to look for will be able to effectively take advantage of the “low-cost” options. That’s why some open access advocates see Gunn’s tweet not as a one-off mistake, but rather as indicative of a broader problem in the scientific publishing industry. “[The tweet] was just bizarrely callous and betrays a general mindset and attitude from publishers,” Tennant said. “What we really need is instant universal access to all scientific knowledge, past and future, and start prioritizing people’s lives over corporate profits.”