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The Academic Whistleblower

A Human Sacrifice Worth Making?

By Lisa Hutchinson | Health Advisory & Recovery Team | August 14, 2024

Recently, I listened to an interview with Dr Carl Elliott based on his published book released in June 2024 titled “The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No”. Dr Elliott is a bioethicist at the University of Minnesota who was trained in medicine as well as philosophy. For years, he fought for an independent inquiry into a case of corruption at a psychiatric research study at his own university in which sadly an especially vulnerable patient lost his life. Carl experienced first hand what it is like to be an academic whistleblower, and endured a terrible experience. His own efforts resulted in him being shunned by his friends and colleagues and impeded by his own university, who denied any wrongdoing, until an independent state investigation finally vindicated his claims after a 7-year-long battle.

Carl posits that As mentioned, his foray into this is very sad and disturbing. He detailed the extraordinary case of a mentally vulnerable man, Dan Markingson, who was admitted to a psychiatric unit after experiencing a series of psychotic episodes. Despite being a danger to himself and others, he was enrolled on a clinical trial of a new multi-drug regimen. Dan was coerced into following the treatment decisions of his psychiatrist, but against the strong objections of his concerned mother, he entered the study because he gave his “consent”. Worried for his safety, Dan’s mother spent several months trying to get him out of the study, after his behaviour dramatically worsened. She wrote to the study centre and study coordinator to ask to remove her son from the study. Despite her justified concerns, she was ignored. Tragically, several months later in the Spring of 2004, Dan killed himself in extreme circumstances.

Carl discussed several stories of how participants of medical research can be deceived into taking part in experimental programmes they do not understand, even in circumstances when the mortality risks are high. Many patients are coerced into studies with blatant financial conflicts of interest or industry funding. When Carl learned of Dan’s case and raised concerns he could not get anyone to take him seriously, so he decided to do his own research and publish a book. By bringing this issue to a broader audience, Carl hoped it would prompt the university into doing something, but this failed spectacularly, and he became a despised figure in his own academic centre.

After learning of Dan’s case in 2008, Carl spent 7 years trying to get Dan’s death investigated. His efforts included creating petitions, writing to the University Alumni, writing to the FDA and federal government. Eventually, he got a state investigation, and although the ruling was positive and vindicated everything he and other critics raised, the follow up was non-existent. His efforts accomplished very little – there was no apology from the academic university, no compensation to victims, no reform, or sanctions for the wrongdoers or efforts to learn from the devastating situation. This was a demoralising ending after such a long struggle.

Ethical standards and integrity have been gradually compromised for several decades. It is unclear why there is pressure to violate ethical rules in the medical research domain. Some of the reasons are financial, but perhaps a bigger issue is the pursuit of glory for some academic clinicians. In psychiatry, balancing the interests of individual participants in trials versus the pursuit of scientific answers is compromised. In 90% of the scandals Carl teaches about at the University of Minnesota, trial participants are mentally ill, disabled, have low socioeconomic status, are vulnerable, and cannot look out for themselves – collective traits that are exploited. As he describes it, the ‘honour code’ in medicine should safeguard and offer protections for such patient groups.

Many whistle-blower stories in the 1970s and 1980s predate the rise of the Big Pharma trials of today. Among clinicians and academics there is a race for glory, status, academic promotion, awards, and prizes. In the 1990s, the financial status changed unrecognisably with recent scandals having huge money stakes, absent from earlier corruption cases. In the past 20-30 years, academic research is less about patient care and more about research funding, which is a toxic situation. Sectors outside medicine have a regulatory system, which is absent in medical research. Instead, an ‘honour’ system exists in which professionals are trusted to behave honestly. Ultimately, there is a quasi regulatory responsibility by industry for overseeing integrity in its multi-billion dollar sector. Coupled with medical arrogance, bioethics within academic centres is now funded by the same industry players funding the studies. Thus, bioethics has been absorbed into academic health centres, relocating ethics to the belly of the beast!

There is a huge difficulty in maintaining independence and not being ‘captured’ by academic medicine. When research funding for academic salaries or tenure is through government-led institutions combined with the pressure to publish findings in high-profile medical journals, this creates a dangerous authoritarian culture. Such an environment has sometimes led to the dehumanisation of the patient, and maintaining ethical standards is a challenge. In a fee-for-service culture where high financial incentives exist, dismissing adverse effects of experimental treatments and lowering the inclusion criteria threshold are all too pervasive. There are of course well-intentioned medical professionals, but corporate overlords, dependence on practice guidelines coupled with the tremendous academic workload, stymies patient safeguarding and forges academic burnout.

What do whistleblowers have in common? They are motivated by honour, integrity, and moral concerns. They have no expectation for financial gain and they do not derive any personal advantages for themselves; in fact, they usually have everything to lose, such as financial stability and reputational damage, yet they still speak out. The reason many whistleblowers persisted in what they felt was a near futile struggle for years or even decades before resolution, was they were tenacious and refused to give up. Notably, cases known to the public are only examples in which a ‘resolution’ was achieved, even though the whistleblowers had reputational damage and no apology or financial compensation for victims was provided. So the situation is likely worse in terms of the treacherous path travelled by many whistleblowers, as we only hear of the most ‘successful’ cases.

Whistleblowers who worked for the public health sector often got nowhere. All whistleblowers had a common metaphor – if they were to look in the mirror, could they live with themselves if they did not do something? Many experience a form of PTSD and none experience improved lives following their exposure. Does disillusionment occur prior to whistleblowing, or when attempts or reports are ignored? Sadly, it seems there is a slow descent into nihilism. Most whistleblowers believe that if the outside world knew what they knew, this would encourage people to defend or change the corruption – notably this never happens. They also hope that close friends or relatives will stand by them, but in its absence, an existential break occurs.

Some whistleblowers feel a sense of guilt because of their complicity in their own industry. Others feel guilt out of a sense of disloyalty to their peers or not wanting to expose an entire institution into disrepute. The notion that whistleblowers are heroic victorious figures that embark on a ‘David versus Goliath’ image is a falsehood! Perhaps the whistleblower is a rare breed; many who are concerned might be more realistic or disillusioned to begin with, so have a lower expectation in terms of likely justice. Possible reasons there are not more whistleblowers is because they know their action would be futile, they could get disciplined, they did not want to snitch on friends or colleagues, or they had a (misplaced) loyalty to their institution. Indeed, a recent BMA survey reported that 61% of doctors polled about patient safety concerns would not raise concerns because of fears that they or their colleagues might be “unfairly blamed or suffer adverse consequences”.

Organisational loyalty is puzzling because an institution intrinsically seems to instil loyalty, but fighting something that undermines it, ironically goes against those who expose it. One way to address this would be to establish independent organisations to investigate such cases. Although many are aware bad behaviour exists, those in senior leadership positions do not ask, so the corruption remains under the radar. One example was at the Karolinska Institute over lethal synthetic trachea transplants, in which a surgeon had falsified results and misled the hospital about the health of those who received the transplants. While the surgeon involved, Paolo Macchiarini, received a prison conviction, the Swedish legal authorities and Karolinska Institute did not apologise to whistleblowers or compensate the victims. This high-profile case did not tarnish the institute’s reputation; in fact, it is rare for institutions to suffer in medical corruption cases. Leaders at academic institutions worry that if problems are exposed, it will deleteriously impact them, so silence or internal handling is considered the best policy.

One would think it would be better to come clean so that things can be remedied, and the error not repeated, in the hope wrongdoers are punished and institutions reformed. However, in his research and experience, Carl has never come across an institution that took positive resolution steps. Academic organisations still attack anyone who threatens their reputation. Often the senior figures in such scandals, such as Deans, Presidents or Directors, have left by the time a scandal is exposed, which one might think would help reduce any reputational damage. Although no one currently employed would be implicated in such scandals if the culprits have departed, the corrupt behaviour remains unchanged, so it is hard to offer an explanation.

The general public has a high opinion of doctors, believing medical professionals have strong ethics and want to help people and save lives. While this is true for many doctors, modern medicine has become big business financially. Patients are nowadays consumers, which is an inevitable slide into corruption. The marketing of medical devices and drugs has become more covert, such as  bribes given to doctors. The scandals involved to preserve the illusion of integrity internally and externally are egregious. Carl is sceptical that a greater awareness of Big Pharma and how their marketing efforts operate would result in a more-positive outcome.

Ultimately, drug representatives are salesmen: they try to get doctors to prescribe their drugs. For many years, the vast majority of marketing was aimed at doctors not patients, although direct-to-consumer advertising is now ubiquitous. Huge financial sums are at stake, and most doctors do not like to imagine their prescription decisions are influenced by Big Pharma. Drug representatives have developed relationships with doctors – they are mercenaries. In the blockbuster drug era, especially in the USA, it is possible to make billion dollar drug sales for chronic illnesses, and doctors can be exploited to earn millions. Other than consultancy, doctors can receive lavish gifts, such as expensive dinners or premium tickets to expensive events. In the 1990s, the development of script tracking enabled the ability to measure in real time how marketing efforts affected doctors script sales. All drug representatives have access to the same data, so they compete for doctors with highest prescriber practices.

Ultimately, all the systems follow the same money trail. People who run the hospitals are worse, and according to Carl, those getting most from industry have the largest bribes. This farce is omnipresent; alarmingly, many bioethicists are not averse to taking industry money, highlighting that we are falling off the bioethics cliff. It is striking how universal and commonplace the language of medicine has become to describe the human experience. People define themselves on the basis of a medical diagnosis, illustrating how marketing has infiltrated our lives. For instance, people describe medical interventions as the person they are inside and how this fulfils their authentic self. It is an illusion that an intervention helps you become who you really are on the inside. Carl suggests pressure exists either to fit in or to stand out, which are two sides of the same coin.

Does bioethics have a rescue philosophy? In general, bioethics is a huge disappointment, with the status quo unchanged since the 1980s. Bioethics has taken up residence in academic health centres and is controlled by the same corrupt forces. It is sobering that not a single medical research scandal exists, whether patient care, sexual abuse, or research misconduct, in which a bioethicist has criticized their own institution. They know how unwelcome it would be, so they keep quiet! The conclusions of Carl’s book and interview are disheartening: being a whistleblower is not worth the hassle or personal devastation involved for the noble individuals who speak out. Since the Covid era, whistleblowers have become more prolific as many no longer accept the associated injustice. Let’s hope this seeds change and a much-needed new cultural shift to inspire and support future academic whistleblowers rather than deter them. The brave but solitary path of the academic whistleblower must be a human sacrifice worth taking!

August 15, 2024 - Posted by aletho | Book Review, Corruption, Science and Pseudo-Science, Timeless or most popular | United States