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Scientists Behaving Badly: the Berlin Patient

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


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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.

 

Nathalia Holt About the Author: 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. Follow on Twitter @nathaliaholt.

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






Comments 25 Comments

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  1. 1. julianpenrod 12:02 pm 06/20/2012

    Essentially, it’s saying that the results of someone’s work should be validated by those who weren’t capable of coming up with the same ideas themselves. And, of course, the idea of personal animosity, envy, selfishness don’t enter because, as “science” devotees insist, “‘scientists’ are incapable of any human frailty, from lying to acting against someone else’s best interests”. Notice, though, the reference to individuals “disobeying” by placing items in the media. More like a Fascist regime than a search for the truth. Keeping the facts from the “rank and file” until New World Order High Command decides if it will benefit them more than the NWO wants! How does placing items in the media keep “scientists” from testing it and issuing retractions, if necessary? But, if proof in the pudding is desired, consider this point in “peer review’s” pedigree. There are almost no theories, models, analyses that don’t differ from what they were even only a few years ago! There are no “science” journals that don’t contain reports of old ideas being brushed aside. This is why issuing retractions for “hastily” placed claims represents no problem! “Science” devotees look at it only as an amusement park ride of new claims, so they don’t see that these ideas being supplanted were “peer reviewed” when they first came out! And, for it’s part, “science” tries to whitewash the situation by playing up its willingness to change its mind, never once touching on the fact that, subsequently, there’s nothing “scientists” say now that you can really hang you hat on, nothing that definitely won’t be replaced even only a couple of years from now!

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  2. 2. Arlenna 1:04 pm 06/20/2012

    I am really confused by this post–so, talking about your work publicly before it is published is somehow shameful? Uhhh… unless there’s some competitive reason not to, it is pretty common.

    The examples of Salk and Gallo don’t really make any sense either. Are you saying they “lost credibility” because they were wrong about what they said before publication, or just because they said it? Did they ‘erode the hope of patients worldwide” by speaking publicly about those things? Your metaphor is not meshing here.

    Peer review is just a mechanism, not some kind of divining rod for “the truth.” Sure, scientists shouldn’t mislead the public about their work with OR without peer review, but that doesn’t seem to have anything to do with the examples you are putting forth here.

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  3. 3. Arlenna 1:11 pm 06/20/2012

    I am even more confused after reading the press release. It’s some kind of journalistic report arising from what appears to be a legit scientific workshop on HIV drug resistance and curative strategies at which a researcher presented something about this case. Scientists present preliminary work at conferences all the time; was the press release pushed out into the world by this scientist or something? It doesn’t look like it to me…

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  4. 4. Mendrys 3:01 pm 06/20/2012

    Julienpenrod,

    You seem to have a jaded view of the process for releasing study results via publication in peer reviewed journals and of science in general. Can you give me one instance where a scientists has said ““‘scientists’ are incapable of any human frailty, from lying to acting against someone else’s best interests”? Indeed they are subject to the same human frailties as everyone else and this is one reason out of many that the peer review process should be adhered to. Too many times have results been made available thru the media before any peer review has taken place in order to make headlines. Remember the cold fusion results that made headlines in the late 80′s? The findings were not replicated anywhere and fraud was perpetrated on the general public.

    BTW, do you know where the technology that has allowed you to make this post came from? Do you know where GPS technology and just about everything other modern convenience originated from?

    Of course ideas in science are in constant flux and there have been studies and ideas that were not accepted by the community for a variety of reasons, hubris being one of them. That doesn’t invalidate the process and doesn’t mean that releasing study results via the media first will yield any better results.

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  5. 5. treddy 3:47 pm 06/20/2012

    “Timothy Brown, the Berlin patient, has been off therapy for 5 years and is, //for all intensive purposes//, functionally cured of HIV.”

    The proper phrase is, “for all intents and purposes”. The phrase “for all intensive purposes” has no meaning.

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  6. 6. Bora Zivkovic 4:44 pm 06/20/2012

    @treddy – thanks for the heads-up. Actually, that is one of my pet peeves, so I am now peeved at myself for not noticing ;-)

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  7. 7. marcokatz 7:37 pm 06/20/2012

    As a university instructor, I find the lack of understanding in some of these comments troubling. So far, a few of the remarks posted here look more like the “flaming” one encounters on social network sites than the serious thoughts of engaged intellectuals.

    First of all, charges of Fascism and advocating a “New World Order” go so far over the top that, in a world filled with serious abuses of power, the person making them in this context must fear for his or her credibility. The writer of this article has not advocated any form of censorship. Instead, she has attempted to provide a brief lesson in scientific process. Yes, scientists and, in fact, all serious academics hope for peer review, not only because we yearn for credibility but also in order to get new information and improve ourselves. Before submitting new ideas, we want to check them out as thoroughly as possible. We know we have frailties and thus try to get as wide a spectrum of informed opinion as possible in established forums where our credentials, and those of our colleagues, can be assessed and periodically reviewed. This may seem like a boring process to people capable of quickly popping out epithets and calumny before considering the case before them, but it has served as a way to develop useful information. Sadly, some folks adamantly refuse to learn, finding it easier — and probably more instantly gratifying — to just flame away, calling others names without the bother of informing themselves.

    Keeping in mind those previously-mentioned serious abuses of power, real people suffer from misinformation. Hopes are unfairly raised and subsequently dashed, and too often spurious “cures” have done more harm than good. Even though I remain wary of all academic processes, I prefer to entrust my medical care to professionals who have studied, collaborated, and shared ideas than to individuals who already think they know it all and cannot wait to get their names in the popular press. They have the right to say anything they want to the press, but scholars, such as the author of this article, have an equal right — and, I assert, a responsibility — to call them on it when they get their facts wrong.

    Regarding “for all intensive purposes,” a couple of commentators have gotten this one wrong. Although the phrase has little to do with the serious issues under discussion, it interests me as a scholar of language and literature. Too many readers confuse sayings with rules. Of course, there is a saying that in one variation, with centuries-old roots in English Common Law, goes “for all intents and purposes.” Old sayings, however, do not form rules of grammar and syntax. Generations of sticklers and self-proclaimed grammarians notwithstanding, the phrase “for all intensive purposes” violates no laws of language; in this case, it served better than the cliché.

    This article, “Scientists behaving badly: the Berlin patient,” serves a useful purpose, and its author deserves more congratulation than contempt. The ill-considered comments appended to it only highlight the need for greater emphasis on intellectual processes. Certainly, the issues raised here admit differing views that ought to receive more discussion, and I encourage all interested parties to demonstrate their concern by reading the text as published, considering the ideas presented, and then formulating arguments that respond to those ideas instead of popping off with ad hominem attacks. Scientific inquiry will be better served by informed debate than rapid responses.

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  8. 8. Arlenna 9:57 pm 06/20/2012

    LOL!! Okay “marcokatz”, I wonder why your writing style sounds suspiciously similar to that of the author of this blog post…. Hmmmmmm…

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  9. 9. aetiology 10:46 pm 06/20/2012

    I’m curious why you included Gallo. First, you have the timeline wrong. It wasn’t a month later–the press conference was April 23rd, and papers were published by Science on May 4th. Second, the way you have it worded suggests that they weren’t even peer-reviewed–at the point of the press conference, the papers had already been reviewed and accepted. If your beef is with announcing results prior to peer review, he’s not really an example of that.

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  10. 10. LarryW 10:58 pm 06/20/2012

    Thank you, marcokatz for an intelligent and rational comment.

    I would go so far as to ask Scientific American to monitor comments using something similar to peer review to not allow comments from those with only typing skills, as evident by the many inane comments here.

    I, for one, would like to read SCIAM including comments from those intelligent enough to offer comments and add something to the discussion.

    I know this will shield me from reality that the vast majority of Americans are idiots; that has been evident for decades. I don’t need anymore reminders.

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  11. 11. julianpenrod 12:44 am 06/21/2012

    The defenses of “peer review”, in their machinations, demonstrate the underhandedness which informs so much “science” today.
    Mendrys demands “one instance where a scientists [sic] has said, “” [sic] scientists’ [sic] are incapable of any human frailty”. First, I said “science” devotees hold to that idea, but, tell the truth and shame the Evil One, when did “scientists” ever promote the perception of themsleves as anything but infallible? How many of their “discoveries” were attended by provisos that they might be wrong? They said the isotope populations in earth and moon were so alike, one had to have been torn from the other by collision with another body! No other conclusion was possible, because they were so alike! Now, we are told they were too alike. There had to have been some admixture from the other body! Was that ever mentioned in that “theory”? “Scientists”, even if tacitly, promote the idea that they can do no wrong. Do they ever deliberately and overtly make an effort to disabuse people of such overrriding confidence in them?
    marcokatz utilizes the New World Order non argument technique of dismissing ideas as untrue without disproving them. marcokatz dutifully describes my statements as “flaming” rather than serious thought. “Science” devotees will do as ordered, then, and extend no confidence to my statements. Even though they weren’t disproved! marcokatz then says claims of Fascism and a New World Order are “so far over the top”, I must fear for my credibility. Prove it. Prove there is no Fascist substructure, no New World Order. Until then, it is just doggerel to attack what I say. But “science” devotees, one of the mainstays of the New World Order power base, won’t require proof. They have already been instructed to think any “scientist” and anyone who defends “science” is eminently and unquestionably truthful and honorable. So they say things without proof and get away with it.
    And LarryW goes a step further, saying to completely insulate Scientific American. To say that this and only this, what “scientists” and “science” devotees say, is absolute truth, that nothing else is true and so must not be printed!
    The defenders of the New World Order don’t mind making their agendas obvious.

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  12. 12. TheBerlinPatient 2:53 am 06/21/2012

    I am Timothy Ray Brown. I very much appreciate Nat’s article. I am not a scientist. However, many medical scientists believe that I am, at least functionally, cured. I feel healthy and there is no replicable virus in my body. Who cares that non-replicating virus is in my body. My doctor, Steven Deeks, predicted that a controversy would arise. My case has led medical scientists to search for a cure for HIV that would not cause the same hell I went through. I am not publicizing my case for myself. I feel that I need to work for a cure for everyone else. I could not live with myself if I were not to do this. Why do these people feel the need to attack me? I do not understand! Alain Lafeuillade’s blog was yellow journalism. It was not scientific. Even I can recognize that. I thought he was a friend. I do not understand why he turned on me. I am thankful to all of the scientists who still believe there can be a cure for HIV and other diseases through a better understanding of the immune system and genetics. I thank all of you who are defending me as well as Dr. Gero Hütter, who has become a good friend of mine.

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  13. 13. Arlenna 8:53 am 06/21/2012

    Timothy, nobody who has commented here is attacking you. I for one am really proud of science for having achieved what it achieved for you, and of you for giving so much of yourself to help others.

    I just don’t think that Nathalia communicated any of the details of this controversy very well in her blog post. She used examples that were really not functionally related to the case she was trying to make, and wrote it all in kind of an obscure, inside referential style that made it very confusing to anybody who wasn’t in on the story already. The take-home message from her post seems to be “scientists shouldn’t express scientific opinions publicly in any forum other than peer reviewed research articles–research should only be talked about after it has been published” but then, she was using the example of Yuki presenting the data on your archived samples at a conference (public but not peer reviewed) and also of Salk and Gallo (stories that really don’t fit the metaphor she is building AT ALL as far as I can tell).

    In the end, it just turns out to be really ironic that she is blogging her (likely scientific, since she is an HIV researcher, after all) opinion that “The problem, of course, is that the new data we have on the Berlin patient has, in fact, nothing to do with his cure…” and “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.” while simultaneously chiding Lafeuillade for having done the same thing. When Lafeuillade did so after having seen the primary data in question in the research presentation by Yuki at the conference in Spain. Can she say the same?

    There is a long history of discussion of the role of blogs and other social media resources in the non-traditional peer review of science (Google the “arsenic-based life” controversy for more details). The reality of modern science is that when data gets put out there (in a paper, at a conference, wherever), it does not “belong” to the authors alone to interpret and dissect. Yuki presented his data–others are now dissecting it.

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  14. 14. TheBerlinPatient 9:34 am 06/21/2012

    Arlenna, I agree that dissecting the data is important but misinterpretation of said data and blogging it with sensationalistic headlines is not good science.

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  15. 15. Arlenna 9:56 am 06/21/2012

    After reading the specific blog posts from Lafeuillade, I actually don’t see the misinterpretation part. He describes the low detection limits of the assays used and the irreproducibility of the experiments, and talks about the problems with the way each group who generated various bits of data that were used in those presentations used different samples. Rather than interpreting it himself, he seems to be questioning the interpretation of the researchers who presented the data at the conference.

    Regardless, if Holt wanted to call him out for writing a press release about something he was wrong about, she should have just done that explicitly. As you can tell from my early comments, I had no idea what she was talking about until I read what several other people (and the now-apparent target of the post) had written about this issue. When the only way that someone can understand what your blog post was actually about is through the comments and responses, that means you didn’t do a good job of writing your blog post. And when you’re a blogger deriding another blogger for posting scientific opinions on something, it’s kind of ludicrous to simultaneously be explicitly and implicitly sharing your own.

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  16. 16. julianpenrod 10:41 am 06/21/2012

    Some points should be made.
    Among other things, note that no proof has been provided at all that the individual with the username TheBerlinPatient is really Timothy Ray Brown! It is only an individual taking that username, claiming to be that individual, giving dutifully laudatory remarks about “science”. And replies are actually addressing the individual by first name, as if they really were Mr. Brown! A dynamic example of the analytical acumen of at least “science” devotees. Praise “science” and there’s no questions asked, criticize its patent illegitimacies and evident corruption and you’ll be attacked even if your statements are proved.
    It should be mentuioned that, if I had not brought this point out, there would have been replies to this comment along the lines of, “How can you be so callous? Do you know what Mr. Brown went through? How dare you question whether the comment really came from him or not?” Nor is this the first time this has occurred. In the recent case of the Texan who claimed to see a man raping his daughter and then proceeded to beat the man to death, but was then cleared of all charges by the Texas “courts” even without evidence for the truthfulness of his claims being introduced, bringing up such things as that there is no proof the father’s assertions are true brings responses like, “Do you know what that man is accused is accused of doing? FDo you know how horrible that is? How dare you think that someone accused of so heinous a crime is innocent? Better to kill an innocent man than take the chance that they’re really guilty and the guilty will still be among us!” And, so often, pointing out the evidence that the events of Spetmber 11 were an engineered fraud brought responses of the form, “How dare you bring up those kind of questions? You dishonor the people the Bush Administration orders us to believe died there to say things like that!”
    And, note that the “scientists” and “scienbce” devotees never rushed to condemn that kind of “reasoning” as faulty!
    Another dynamic demonstration of the “validity” of “science”.
    And consider Arienna saying the inmport of the article is, “scientists shouldn’t express scientific opinions publicly in any forum other than peer reviewed research articles”. Yet, only a week ago, Scientific American ran another aritlce, by Bonnie Swoger, openly stating that peer reivew journals only publish material they, personally, consider “sufficiently original or interesting”! What’s more, the comments of those actually making this decision “are not meant for public consumption”. In other words, the “peer review” process incorporates withholding the truth on the basis of agendas those making the decisions do not want the public to know! Who knows how many could be served by the items they decide not to publish, fr reasons they don’t want the public to know? In the face of that, it sounds like it’s more likely truth will get to the public through mainstream media than peer review!
    Note, too, that, while censorship is so often condemned, even by New World Order quislings, in other governmens, they themselves champion of the withholding of the truth by corporate entities on the basis of “The Constitution only holds on public property! You aren’t required to allow anyone to say whatever they want on private property, even like a magazine or website! Even if it means permitting corporate forces to withhold the truth, it doesn’t matter. Private property trumps the interests of those who don’t own the private prooerty. After all, this nation was founded to make the corporate rich and cravenly influential prosper. It’s only sold as a bvastion of liberty to those stupid enough to believe it!”

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  17. 17. Bora Zivkovic 11:48 am 06/21/2012

    So far, all the commenters on this thread are who they say they are.

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  18. 18. julianpenrod 12:47 pm 06/21/2012

    Bora Zivkovic claims, “So far, the commentors on this thread are who they say they are”. Does that include marcokatz, Arlenna, treddy, Mendrys, aetiology, LarryW, and so many others on all the other threads who don’t provide their last name and sometimes not even their first? And how does Bora Zivkovic know? It’s easy enough to claim that, but what proof does Bora Zivkovic have? What will Bora Zivkovic provide? Basically, “science” says only what serves its corporate/political purpose at the time, but shows no concern for truth, which can include providing absolute, incontrovertible proof to everyone, not just insistences that something was proved and orders that everyone believe that.

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  19. 19. Arlenna 1:19 pm 06/21/2012

    Bora Zivkovic has the IP and email addresses because he is an administrator. Most of the rest of us have online handles that are well enough known, so yup, he knows if we are who we say we are or not. lol.

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  20. 20. Arlenna 1:20 pm 06/21/2012

    And, I will add, he also has the decency and respect of online privacy to not divulge those details, just confirm the overall concept.

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  21. 21. Arlenna 1:26 pm 06/21/2012

    As for the pseudonymity complaints… yaaaaaaawn.

    http://scienceofblogging.com/to-be-or-not-to-be-a-pseudonymous-blogger/

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  22. 22. julianpenrod 1:32 pm 06/21/2012

    So Arlenna admits the secretive, clandestine, non transparent, closed door policy of the fraud, “science”. Arlenna insists that Bora Zivkovic has the evidence that everyone is who they say they are, but, at the same time, Arlenna says Bora Zivkovic will not release that proof!
    In other words, accept what you are told to accept, without proof!
    Because I am associated with “science” and you are ordered to believe that I am completely trustworthy and incapable of error!
    “Science” is nothing but a constant violation of the very principles it claims to represent!
    The most you will see by way of “proof”, and it’s happened before, is simply to deny me the rifght to place any more comments exposing the fraud.

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  23. 23. Arlenna 1:56 pm 06/21/2012

    Sorry I fed the troll, everybody, I’ll stop now–lol!

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  24. 24. Bora Zivkovic 11:34 pm 06/21/2012

    @julianpenrod – yes, I am the editor. Yes, I have IPs and email. And no, no way in hell I will out the pseudonymous commenters without a subpoena from a court.

    On the other hand, I have received a number of complaints about you, and the way you derail multiple comment threads with uninformed, angry, derailing, broad-brush anti-science comments. Let’s say I won’t ban you yet, but I am watching you. We are looking for constructive discussion of specific scientific topics. We are not interested in general anti-science conspiracy theories poisoning every comment thread, dissuading serious people from commenting. Take this as a first warning.

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  25. 25. Piume 12:09 am 06/22/2012

    Of course, it is very interesting to talk about HIV. It is firstly found in African countries. The cause root for HIV is sexual and blood transmission. The sensual transmission can be some what control by obeying religion. And blood transfusion can be control by careful infusion.
    That is why Western countries should more invadering to cultural norm. It should be guided by Eastern countries.

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