Scientists behaving badly: the Berlin patient

Join Our Community of Science Lovers!

This article was published in Scientific American’s former blog network and reflects the views of the author, not necessarily those of Scientific American


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.”


On supporting science journalism

If you're enjoying this article, consider supporting our award-winning journalism by subscribing. By purchasing a subscription you are helping to ensure the future of impactful stories about the discoveries and ideas shaping our world today.


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.

 

Nathalia Holt, Ph.D. is an HIV researcher at the Ragon Institute of MGH, MIT and Harvard University and is currently writing her first book, The Berlin Patients, to be published by Dutton. Follow her blog and on twitter @nathaliaholt.

More by Nathalia Holt

It’s Time to Stand Up for Science

If you enjoyed this article, I’d like to ask for your support. Scientific American has served as an advocate for science and industry for 180 years, and right now may be the most critical moment in that two-century history.

I’ve been a Scientific American subscriber since I was 12 years old, and it helped shape the way I look at the world. SciAm always educates and delights me, and inspires a sense of awe for our vast, beautiful universe. I hope it does that for you, too.

If you subscribe to Scientific American, you help ensure that our coverage is centered on meaningful research and discovery; that we have the resources to report on the decisions that threaten labs across the U.S.; and that we support both budding and working scientists at a time when the value of science itself too often goes unrecognized.

In return, you get essential news, captivating podcasts, brilliant infographics, can't-miss newsletters, must-watch videos, challenging games, and the science world's best writing and reporting. You can even gift someone a subscription.

There has never been a more important time for us to stand up and show why science matters. I hope you’ll support us in that mission.

Thank you,

David M. Ewalt, Editor in Chief, Scientific American

Subscribe