UK expert: AIDS data should not be shared until requesters shown to be HIV-

Sometimes activists fail to appreciate the difference between activists and journalists. Activists seek to advance a particular point of view. They may become impatient and even intolerant of those who disagree with them. Responsible journalists, in contrast, allow a diversity of viewpoints to be expressed through their writings. They often resort to direct quotes to demonstrate that persons are not being misrepresented. Quoting by journalists does not necessarily represent endorsement.

Often journalists are much more effective than activists: they allow persons opposing the activists to embarrass themselves in ways that the activists could never succeed in doing.

Foot-in-Mouth-DiseaseIn a must-read essay in the Wall Street Journal, Amy Dockser Marcus provides a spectacular opportunity for Stephen Lewandowsky. Stephen, my man, sometimes the mouth works quicker than the brain. You found yourself in one of these occasions.

Unfortunately, the WSJ article is paywalled, but you can circumvent that by clicking on this link on an iPhone.


Amy headline

The article begins

A controversy surrounding a study of chronic fatigue syndrome is prompting some scientists to push back against demands that they make medical research data more widely available to other researchers and patients.

Data from clinical trials and other studies are increasingly open to public scrutiny. Proponents of open access say it can aid other scientists seeking to check research conclusions, and patient groups say it can help determine how useful potential new treatment options may be. The National Institutes of Health requires researchers it funds to make data available to other scientists and the public. And some medical journals have begun making open release of data a condition for publication.

But some scientists are concerned that research data in the wrong hands may be misused or misinterpreted. They also fear they may face harassment from other scientists or patients who disagree with the findings.

Amy Dockser Marcus interviewed a number of us, including journalist/public health expert and Berkeley Professor David Tuller, and accomplished citizen-scientist Tom Kindlon. But she highlights
Anna Sheridan Wood

Yes, nice move, thank you. It is Dr. Sheridan because suffering from a terrible illness does not revoke a PhD from someone who has earned it.

Stephan Lewandowsky, in contrast, seems to think that suffering from an illness confers a spoiled identity. That damage strips a sufferer of other relevant social characteristics along with any credit that goes with them. As told to Amy Dockser Marcus:

Lewansky at Bristol

So, because Dr. Sheridan is a patient, the PACE investigators need to be protected from reanalysis of their data. Instead, this should be left to an independent body. Or Dr. Sheridan just has to be told “no.”

By the way, I’m in touch with others who have formally requested the PACE data. All are eminently reasonable, competent people, although some of them have been struck down by their illness before completing their degrees. But so what, what does that matter?

 Slippin’ and slidin’

Stephan Lewandowsky keeps trying to stay out of trouble on this topic, slippin and slidin’-

To borrow a quote from Little Richard (who doesn’t have a PhD)

Okay conniver, nothin’ but a jiver
Done got after your jive
Okay conniver, nothin’ but a jiver
Done got after your jive
Slippin’ and -a-slidin’ – peepin’ and a-hidin’
Gonna be your fool no more.

Lewandowsky co-authored a Nature commentary, Research integrity: Don’t let transparency damage science  that drew outrage with:

 Orchestrated and well-funded harassment campaigns against researchers working in climate change and tobacco control are well documented3, 4. Some hard-line opponents to other research, such as that on nuclear fallout, vaccination, chronic fatigue syndrome or genetically modified organisms, although less resourced, have employed identical strategies.

Lewandowsky’s next act was to treated patients and anyone else upset by the passage to a lecture on logic and some advice:

Most Christians are definitely not terrorists

On the basis of that expertise [Lewandowsky’s, that is. Don’t you just love this pomposity?] it has become quite clear that some (note that crucial word again here: some) opponents of chronic-fatigue research are not engaging in reasoned discourse but are exhibiting all the hallmarks of pseudoscience. The evidence for that is on the public record, in broad daylight, and for all to see who care to look for it.

There are two conclusions that do not follow from this: First, it would be illogical to tar all opponents or critics of chronic-fatigue research with the brush of pseudoscience.

Second, it would be illogical to conclude that just because some opposition to chronic-fatigue research relies on pseudoscience and harassment, that research is thereby vindicated and must be beyond reproach. Perhaps there are problems with some research somewhere, notwithstanding how unreasonable some critics are.

However, given how quickly people can jump to conclusions when it serves their purposes, moderate critics of chronic-fatigue research—who exist as surely as there are people of faith who are not terrorists—ought to consider whether it might not be in their best interest to distance themselves from such rhetoric lest it impair their own credibility.

So, patients, if you want to avoid impairing your credibility” and gain access to data, you should distance yourself. Maybe under oath, assert, “I am not, and I have never been….”

I am requesting the PACE trial data, but I am not a patient. One of my group identities is that I am an American. Donald Trump is an American presidential candidate who hopefully has lost by the time you read this. But until then, Donald Trump does reckless things with data. Must I document I have no association with Donald Trump in order to receive the PACE trial data?

If the intended audience did not understand the condescension, Lewandowsky’s coauthor of the Nature commentary reinforced the message in a patronizing tweet with a flow chart:

cut dorothy bishop patronizing

Cleaning up any remaining misperceptions, Lewandowsky elaborated in Transparency and Scrutiny vs. Harassment and Intimidation: The Triage

Now suppose the Ku-Klux-Klan (which, alas, exists) and the Anti-Muslim-Bigotry League (which likely exists in some form if not by that name) demand access to the data for reanalysis along racial and religious lines.

Did my participants really give consent to have their data used in that manner? Would anyone from a minority group ever again give consent to participate in an ostensibly “harmless” experiment to discover better training techniques if those data can be exploited by a clever post-hoc fishing expedition to score a political point?

To my knowledge, this problem has been largely ignored in the open data debate and it urgently requires attention.

By the way, the problem would be manageable, and the original researcher’s control enforceable, if requestors have to preregister analyses in the same way that the original researchers hopefully did in the first place. (And yes, we should move towards a culture in which pre-registration becomes a strong normative expectation, if not a requirement, of research.)

Lewandowsky cites a data request from the Ku-Klux-Klan as an example. He apparently thinks he is avoiding the opprobrium associated with using black people as his example. I have no idea what he means by the Anti-Muslim-Bigotry League, but I assume that Lewandowsky also allows them to escape condemnation from Muslims and maybe anti-Muslims. But who cares? And if we accept his criteria, who would adjudicate less extreme examples?

Is he suggesting that any request for data be treated under the freedom of information act, and rejected until the guidance of the Information Commissioner’s office is sought?

And are only critics, not the original researchers who are subject to such scrutiny for bias?

Why require unreliable and controversial judgments of possible biases before releasing the data? Why not just make the data freely available – and depend on pre- and post-publication peer review to shape publicly available interpretations?

Oops, wait, the fast tracked prepublication peer review of the 2011 The Lancet review process did not catch egregious errors in interpretation that were consistent with the financial interest of the authors.

Prepublication peer review is hardly perfect, but post-publication peer review is a backup in social media and blogs and PubMed Commons  and PubPeer.

Actually, when problems in Lewandowsky’s PLOS One article, The Role of Conspiracist Ideation and Worldviews in Predicting Rejection of Science were pointed out in post publication peer review  he resisted corrections until the journal imposed them.

So what about my title: AIDS data should not be shared until requesters are shown to be HIV negative?

I’ve been a collaborator in some HIV/AIDS research. One trial provided a Nursing Intervention for HIV Disease Management Among Persons With Serious Mental Illness. Another provided Managed Problem Solving for Antiretroviral Therapy Adherence. The managed problem-solving tackled basic stumbling blocks to adherence that patients specified, who were often intravenous drug users. I doubt that either of the patient populations in our studies would have it together to request data, given their level of functioning. But so what?

On the other hand, some HIV/AIDS data have controversial interpretations from investigators for whom questionable research practices can reasonably be suspected. Critics might want to scrutinize the data, even adopting a forensic approach to pursue their skepticism.

Logically  Lewandowsky arguments can be extended from patients with chronic fatigue syndrome/myalgic encephalomyelitis  (MECFS) to persons at elevated risk for HIV/AIDS. Lewandowsky would never pick on them. Most are able-bodied, many are strong, and some would be inclined to kick his ass for such a hateful suggestion that they need to get tested for HIV. And many of the able-bodied, strong ones would be inclined to kick his ass on behalf half of the fewer who were too ill to defend their social identity.

Patient-Ollie-Cornes-with-petition-adjusted-300x246In contrast, the MECFS patients are much less able to stand up for themselves. Many of them are lying flat on their backs in darkened rooms in constant, undertreated pain. Yet, patients accumulated over 11,000 signatures on a petition demanding retraction of the PACE clinical trials paper. Sadly, they could not seize the moment and get the social media attention that would come with marching on The Lancet editor Richard Horton’s office in London. They couldn’t assemble a brigade or even a platoon. They are too damn sick. They had to mail the petition. So these weak, sick patients are more fitting targets for bullying by Lewandowsky.

But indulge my fantasy for a moment in evenly applying Lewandowsky’s unfair standards. Some people, whether scientists or not, want to get a peek at some AIDS data about which they have doubts. But to demonstrate that they lack bias, they first must get HIV testing. They then submit their test results to the investigators who generated the data, who then reject their requests. The requesters then have to appeal to the ICO. After months, the ICO finally decides ontthe appeal and sides with them. But then the investigators appeal that decision and everybody waits many more months for the ICO to decide. Maybe, who knows, there were unnoticed problems or opportunities in the data missed by the investigators. With these opportunities untapped, too many more people die of AIDS during the drawnout process.


5 thoughts on “UK expert: AIDS data should not be shared until requesters shown to be HIV-

  1. Lewandowsky has proposed creating an independent body that can weigh in on data requests either from scientists or members of the public when things are contested.

    This sounds a lot like the Information Commissioner’s Office which recently ruled that PACE trial data should be made available to Mr Matthees who requested it under the freedom of information act.

    Liked by 1 person

    • What Lewandowsky has suggested is very different from the FOIA provisions where, the Information Commissioner and all the stages of appeal are Governed by legislation, and which are open to challenge under that legislation and ultimately open to change by Parliament. Lewandowsky’s proposal would be just another old boys and girls club where insider justice, self interest and parochial concerns would trump any concern for open data.

      Worse still Lewandowsky’s proposal would create a legal nonsense under the current UK FOIAs because not only would Lewandowsky’s “independant body” not be able to obstruct any judgement by the Information Commissioner but the “independant body” would itself be subject to the FOIA given that it would have all the characteristics of a ‘public body’. And if it was subject to the FOIA, the “independant body” could itself be required to share any data that it itself had judged non shareable. Unless of course Lewandowsky is proposing a trick to avoid the FOIA entirely by having his “independant body” as private operator – a sort of tax haven for data. Or perhaps giving judicial status to the “independant body” and making it superior to the Information Commissioner, in effect taking research data outside the scope of the FOIA entirely.

      I don’t think it would be unfair to charge Lewandowsky with a serious case of Dunning-Kruger syndrome, he seems to have no grasp of UK or International Law and seems to believe in bureaucratic solutions as being absolute. As the author of this blog has asked previously – Why not just accept the principle of open data ? to which I woud add – and avoid all these nonsensical bureaucratic and legalistic complications.

      Liked by 1 person

  2. Well said!

    I’d like to add another thought. I have ME, and am perfectly capable of analyzing statistics. Am I simply to put my blind trust into doctors who have only read the summaries of this study and who assure me that Graded Exercise Therapy is the answer and is safe? It is my life, my illness and my future. As with any medical intervention, I expect to be able to participate in the decision, and to do so, I need the facts. When there is considerable doubt that the summaries are fair, then the raw data is essential.

    Liked by 3 people

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