News of the thyroid cancer that took the life of Chief Justice William Rehnquist sent thousands to the Internet to learn more about the symptoms and causes of this deadly disease.
Whenever people want to learn about a disease that afflicts a famous person or perhaps more importantly, a family member, they regularly turn to search engines such as Google to help them find the information. Almost without exception, one of the first sites that come up in this kind of Google search is MedlinePlus, a National Institutes of Health (NIH) Website created specifically to provide reliable health information to the public.
Search engines harvest a wealth of information from the Web, ranging from patient-oriented explanations of diseases and treatment options to highly technical articles published in scientific journals. Most people find what they need by visiting patient-oriented sites and talking with their doctor, but in some instances, people want more.
In an attempt to meet this need, NIH is spending millions of dollars to establish an online collection of manuscripts from articles based upon research it sponsors. While on the face of it this seems like a boon for the public, there is in fact a poison pill hidden in this gift from the federal government.
NIH estimates that it underwrites only about 10 percent of the research published each year, a fact few members of the public realize. Moreover, much of this research involves cellular, molecular and genetic studies of disease, which do not have a direct impact on disease treatment. Second, and perhaps most important, NIH’s collection will consist of research manuscripts that have been peer-reviewed but have not undergone technical review or copy editing. These are services publishers provide to improve clarity and safeguard against potential hazards such as dosage errors. A study recently conducted by one non-profit scientific publisher of a clinical journal found 214 possible errors in 129 peer-reviewed author manuscripts, the same type of manuscripts the NIH plans to offer to the public. Finally, the NIH program will not provide the public with access to review articles and commentaries, which are particularly valuable to the public because they provide interpretation, and context for new research findings.
There are those who say patients should not have to wait at all for access to the kinds of technical reports NIH plans to post. Their slogan is “taxpayers should have access to research they paid for.” These advocates conveniently dismiss the fact that there are real costs associated with publishing.
In any case, nonprofit scientific publishers have already made nearly 1 million articles freely available to the public and add about 10,000 more free articles to the web every month. These articles represent not just the 10 percent of research funded by NIH, but one hundred percent of the basic and clinical research their journals publish. Nonprofit scientific publishers also work with patients to provide them immediate access to key articles, regardless of funding source.
Those pushing the NIH plan for public access claim that any taxpayer-subsidized article should be free to the public. But does that really make sense? The government also subsidizes wheat growers, but they still sell their grain, and no reasonable person asks those who produce bread from that wheat to give their bread away for free. Surely bread is as much a necessity as access to medical and scientific information. Yet nonprofit publishers, who are providing the public with access to more articles about more subjects than ever before in history, have been told their efforts are not good enough. The reasons for this double standard are unclear.
NIH’s primary mission is to support the research that leads to treatments and cures.
The nearly 70 scientific and scholarly research publishers who comprise the DC Principles Coalition already offer the public free access to the final versions of all research articles they publish. At a time when research funding is already constrained, NIH should not divert its scarce resources to build a partial collection of incomplete and potentially flawed information in the name of public access. To do so is medically and morally wrong, and is ultimately not in the public’s interest.