If I may propose a warning label for pharmaceuticals: Don't mix with money. Here are just a few reasons why:
- Running Phase I drug trials on prisoners, homeless people (recruited from Eli Lilly-funded homeless shelters), undocumented immigrants, and people recently released from prison unable to find other employment, people in developing countries where there's little to no oversight (not that there's any real oversight in the above US cases either!).
- Relying on for-profit IRBs, so you can buy your way to "yeah, this checks out."
- Elevating 'thought leaders' who promote diagnoses and drug treatment regimens... Here are a few ways pharma companies can prop up a thought leader's career: funding their research and travel, ghostwriting articles to be published under their names, giving them public-speaking training, assigning them as investigators on sketchy clinical trials to pad their resumes, and just giving them tons and tons of cash and perks (not a complete list). Oh, and silencing their critics by attacking their critics' funding, research, and employment.
- Mimicking scientific research without doing scientific research, including burying results that don't sell drugs — whether signs of ineffectiveness, adverse events, or deaths.
- Promoting off-label prescribing, especially via aforementioned 'thought leaders.' No FDA approval for safety or effectiveness necessary!
- Funding patient advocacy groups to advocate for drugs, insurance coverage of on-patent drugs, expedited and reduced approval processes, and pressure on doctors to relax safeguarding. Patient advocacy orgs like NAMI draw 75% or more of their budgets from pharmaceutical companies that use these advocacy groups to promote drugs that often do not help patients, often do harm, and always make money. As of 2010, Carl Elliott reported that “today virtually every patient advocacy group in the country relies on industry support.”
- Sponsoring "free screenings" at public schools to promote drug treatment of things that are often not medical conditions in any way (like Genentech-funded screening program in Atlanta public schools to promote use of human growth hormone on short kids — not even kids who are short due to an actual deficit of human growth hormone — a treatment plan that runs $20,000-40,000/year for a typical prescribing period of 10 years). Just being short is not a medical condition (and, it turns out, the drug doesn't significantly increase height in kids who don't have a human growth hormone deficit). When I read this, I found myself wondering about the demographics of Atlanta Public Schools... As of the early 1990s, when this screening program was in place, over 90% of Atlanta public school students were African American.
- Shaping the way the public understands an issue through public relations, including corporate-funded PSAs running for free on airwaves to raise awareness of a new disease or diagnosis that — ding, ding! — sells drugs. There's no need to sell antibiotics like this — but for many drugs, success relies less on actual utility of drug and more on medicalizing the human condition, from aging to performance (not just in bed) to anxiety to identity (what happens when a diagnosis goes from "I have X" to "I am X"). “For the psychic comfort of everyone involved, drug marketing needs to be disguised. Developing this disguise is the job of public relations. It does not market a product so much as… manipulate conditions in such a way that more of the product is sold. If the disguise falls off, the campaign will fail.” [Quotes from here on down from Carl Elliott’s White Coat, Black Hat]
- Borrowing the authority of trusted institutions (like schools) to sell drugs. “The public relations expert is always asking himself: How do I take the credibility of a trusted authority and use it for my own purposes?”
- Funding bioethics! “There is no better way to enlist bioethicists in the cause of consumer capitalism than to convince them they are working for social justice.”
Thank you Eliza for shining a light on so many incidences of unscrupulous behaviour and reminding us of how meaningless the phrase "informed consent" is! I love your description of how the PR is required to "manipulate conditions in such a way that more of the product is sold" .
Hi Eliza, I'm not a professional bioethicist but I do serve on both a hospital ethics committee and the hospital's IRB. Much of what you write in this post is helpful, but also please be aware that doing drug research on prisoners, homeless folks, or other vulnerable populations sets off major alarm bells at the FDA, as do material incentives to participate in research. Every single investigator and sub-investigator in a research trial has to submit pretty extensive conflict of interest forms to the IRB and the institution itself can get dinged pretty hard if COI's are uncovered. NOT saying it never happens, and NOT saying that there's no such thing as for-profit IRB's that are more slippery than others, but it's harder than you might imagine to corrupt the IRB/ COI process. It's much easier to do bad research that outright corrupt research: IRB's don't generally check data or offer much commentary on research design if it seems plausible.
In general, the old rule: "don't attribute to malice that which stupidity is sufficient to explain" applies to medical research as well as most other human endeavors.
Re: bioethics, yes, I agree, it's become a festival of Wokeness- OMG what the Hastings Center is sending out these days is almost embarrassing- but sitting where I do in a hospital setting, I see a pretty clear distinction between academic bioethics in think-tanks and at universities and what happens in hospitals and public health organizations. Out in the field, I think there's a backlash brewing against things like race-based distribution of pandemic resources or the absolutely uncritical view of trans "affirmative care" when some docs who aren't ideologues see kids declaring themselves trans who are, on the face of it, dealing with lots of other problems too.
Absolutely there's a collusion between academic bioethics, law and ideological clinics and their supporters in some of the medical associations, but that ideology is not universal.
Finally, re: another commentator's mentioning of Jennifer Bilek: the woman is a frothing anti-Semite who blames Jewish billionaires (and pretty much only Jewish billionaires) for the entire transgender craze. Proceed with extreme caution.