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Scientists behaving badly: the Berlin patient

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As scientists we are taught to present our data and opinions through a defined network. New findings are published in peer-reviewed journals, not the New York Times; our opinions are recorded at scientific meetings, not in press releases. At the heart of this lies our desire to keep science free from the undue influence of the media and untainted by personal motivations. While this system may make some researchers overly wary of speaking with journalists, for the most part it works; cutting edge research is first assessed by scientists with the necessary background, not the general population.

The scientific landscape is littered with stories of those scientists who have disobeyed. In 1954 Jonas Salk spoke on a radio program about the large-scale success of his polio vaccine prior to publication, promptly losing some respect in the scientific community. In 1984 Robert Gallo announced the discovery of the virus that causes AIDS in a press conference with President Reagan’s secretary of health and human services one month prior to publication, and afterward lost much of his credibility.

This past week, we were faced with another example of scientific hubris. At the International Workshop on HIV & Hepatitis Virus Drug Resistance and Curative Strategies in Spain, data was presented on one of the most dramatic cases we have in HIV: the Berlin patient. An HIV positive American, Timothy Brown, who received a bone marrow transplant from a donor with natural resistance to HIV, and consequently was cured of the disease he had harbored for decades, this one patient has inspired numerous clinical trials and given hope to millions of AIDS patients worldwide. Immediately following this workshop, one researcher, not involved in Timothy’s research, released a press release with the tantalizing headline: “The So Called HIV Cured "Berlin" Patient Still Has Detectable HIV in His Body.”

The problem, of course, is that the new data we have on the Berlin patient has, in fact, nothing to do with his cure. Timothy Brown, the Berlin patient, has been off therapy for 5 years and is, for all intents and purposes, functionally cured of HIV. New, unconfirmed data on the presence of non-replicating HIV DNA in his gut is likely to tell us more about viral persistence then about the future of HIV therapy. Unfortunately, the dramatic nature of this press release, and further blog posts by one scientist, meant that the story was widely reported.

The real story here is not about whether the Berlin patient has lingering HIV in his gut, it’s about our interaction, as scientists, with the media. This story will have little impact on research but will erode the hope of HIV patients worldwide. Scientists would be wise to remember that a debate on the Berlin patient is ultimately a debate about one person’s life: Timothy Ray Brown.

 

The views expressed are those of the author and are not necessarily those of Scientific American.

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