Reader Question – What Should Disclosures in Weight Science and Weight Loss Research Include?
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I received the following question from reader Deena:
I love when you talk about the funding and other conflicts of interest of the people who write studies. It seems obvious that you don’t think disclosures are adequate, so I’m just wondering - what do you think that disclosures should include?
Deena is exactly right, I do not think that disclosures as they are currently done are anywhere near adequate. So today I’ll talk about what I wish research disclosures included.
But before we talk about the what, let’s talk about the where. And before we talk about the where, let’s talk about the why.
Why?
Medical research should be understood to be science before business. Thus, what is in the best interest of science must be put before what is in the best interest of any particular business.
The idea that companies should be allowed to create and use studies to influence everything from the FDA, to major healthcare organizations, to government and private insurance coverage, to healthcare provider and patient behavior, but should be allowed to hold back and obfuscate disclosure information (and other information, but we’re talking about disclosures today!) for business/profit purposes is ludicrous and only in the best interest of those profiting from them.
Research should, at the very least, be honest about who is conducting it.
Where?
I think that disclosures should have to be included in the study (not in some other document that you have to dig around for and get access to,) and in front of any paywall. Paywalls for research are the topic for a whole other post, but given that paywalls exist, we should be allowed use disclosures to inform our choices about whether or not to pay for research.
What should be included in those disclosures? Below is what I would like to see included based on what I believe would be best for a clear understanding of financial entanglements.
Study funding
How much did the study cost (overall cost and an itemized breakdown)
Where did that money come from (what people/organizations funded the research and how much funding did each provide)
Financial Entanglements
From what companies with a financial interest in the study outcome have the study authors accepted money and/or gifts?
I’ll note that I think “a financial interest” should be defined in the broadest possible terms. If the study looks at the GLP-1 agonist class of drugs for example, the disclosures should include entanglements with companies that have a financial interest in that class of drugs, not just the individual drug in a given study.
In what roles did the researchers participate with these companies (speaker’s bureau, consultant, attended educational seminars etc.)?
How much money and/or what gifts did each receive?
From what organizations that are funded by companies with a financial interest in the study outcomes (ie: The Ob*sity Action Coalition, The Ob*sity Society et al.) have the study authors accepted money and/or gifts?
From which organizations, in what role, and how much money and/or what gifts?
Is the researcher, or has the researcher been, employed by companies with a financial interest in the study outcomes? In what capacity? If current employees, in what capacity and at what current salary?
Does the researcher own stock and/or have stock options with companies with a financial interest in the study outcomes? How much/many?
Does the researcher stand to personally benefit financially and/or in their career from the outcome of the study?
For example, are they a bariatric surgeon authoring a study that recommends bariatric surgery? Do they run a weight loss practice or clinic or research lab and are authoring a study that recommends weight loss etc. Currently, this is NOT considered a conflict of interest and I believe it should be. If a study author, especially one who is involved in designing the study and/or analyzing/interpreting the data and drawing conclusions has a financial interest in the study outcome, I think that very much constitutes a potential conflict of interest.
So, for example, when a group of study authors create guidelines for, say, higher-weight children and adolescents, and exclude any study that doesn’t have weight loss as a measured outcome (thus excluding any study that might support the benefits of a weight-neutral approach,) and then create guidelines recommending weight loss to children starting at two years old, it would be helpful to know if all/most authors have pinned their finances and careers, in various ways, to selling weight loss to children and adolescents.
It doesn’t just matter because of the potential to consciously and purposefully create a study and interpret the data to create results that are favorable to their finances/career, but also because of the strong potential for subconscious self-justification and confirmation bias based on their world view (we’ve talked before about the book “Mistakes Were Made, But Not By Me” that breaks down the research around this phenomenon.)
Of course, a common argument around this is that none of these conflicts of interest actually compromises the neutrality of the researchers. To this I respond: Great, then you won’t mind disclosing them! Right…right…hello…?
Full disclosure (see what I did there…,) selfishly I would like disclosures like these because they would save me hours of research time. But of course, this is about far more than that. Given the massive success the weight loss industry has had weaponizing terrible research to create hundreds of billions in profit, I think providing full, transparent, honest disclosures is pretty much the least they could do.
Are there other things you’d like to see disclosed? Feel free to add them in the comments!
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More research and resources:
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*Note on language: I use “fat” as a neutral descriptor as used by the fat activist community, I use “ob*se” and “overw*ight” to acknowledge that these are terms that were created to medicalize and pathologize fat bodies, with roots in racism and specifically anti-Blackness. Please read Sabrina Strings’ Fearing the Black Body – the Racial Origins of Fat Phobia and Da’Shaun Harrison’s Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness for more on this.
I think the most important question is whether someone who is involved in this research believes fat people have as much value as anyone else, period. There are corrolaries to this, like, do they make their living trying to define our bodies as inherently diseased? Do they make their living prescribing starvation for fat people as a pathway to moral acceptability (good fatties starve)? Do they make their living teaching higher-weight/faster-growing children to develop eating disorders? It's the eugenics for me.
My comment relates to patient disclosure of disclosures. Have a friend in misery since starting semaglutide but their doctor's pushiness (based on the "amazing results of the cardiac study") convinced my friend they need to stick with it. Have no idea if my pal's MD read the study, it appears to me that over 90% of the participants in that study opted out (yikes!) - but I'd like to see everything you mentioned along with a few simple stats in a study summary disclosed in writing to patients. Like the longer drug summaries in teensy print, a lot of folks wouldn't read them, but some of the info could be summarized in basic English and be set in a table that might help consumers. And prescribers.