Who Can Consent to Research—and What Does That Mean for Forced Treatment?

I am currently re-reading Robert Whitaker’s amazing book, Mad in America. As Whitaker masterfully reconstructs the disturbing history of the treatment of mental illness, something very new struck me that I hadn’t seen before.

The story that got my attention this time was about the Nuremberg trials.

After the second world war, the Allies prosecuted murderous Nazi leaders at the Nuremberg Trials for their war crimes, but what many of us didn’t know is that Nazi doctors who committed heinous crimes in the name of medicine were also prosecuted. The most famous of those doctors, who had evaded capture and was therefore not prosecuted at Nuremberg, was Josef Mengele, otherwise known as the “Angel of Death.” I have met people who, as children, were tortured by Mengele, so I knew that he and his barbarous colleagues had done horrendous things. Breaking a person’s bones continuously to see how long it would take before they would never heal again, for example, but Whitaker describes many other unthinkable experiments that would make anyone with a conscience squirm at the depths of cruelty an “educated” person can inflict on another human being.

As part of the trials, the judges wrote a kind of human rights charter of ethics called the Nuremberg Code to prevent research abuse from ever happening again. The Nuremberg Code requires a few things, including that participants in research are able to give full voluntary consent without coercion. Yet what does that mean for all of the people diagnosed with psychosis who are participants in medical research?

Think about this: people with psychosis are locked in hospitals against their will and forcibly injected with tranquilizing drugs because psychiatry says that they are not capable of making their own treatment decisions. Yet, according to those same psychiatrists, they are capable of consenting to participation in experimental research?

It gets worse when you hear what kind of experiments these were. Whitaker describes symptom-exacerbation experiments running up until the 1990s in the US—the kind of experiments where you give someone a drug you think will make their condition worse just to try to understand the brain processes involved. Something quite a bit reminiscent of those Nazi experiments.

As Whitaker writes, when confronted with the question of consent, the researchers and doctors involved in symptom-exacerbation research defended themselves by saying that they had received written consent from these patients. They claimed that people with psychosis are not capable of turning down psychiatry’s treatments—they are not allowed to say no. But when those same people sign on the dotted line, under coercion from their psychiatrist in a locked hospital ward, to letting the doctors deliberately worsen their symptoms, they are capable to consent?

It seems clear that this is a violation of the Nuremberg code, justified only through the basest hypocrisy. But what interests me even more is that this hypocrisy hides something even greater: that psychiatrists actually know, deep down, that even those so diagnosed are capable of immense recovery and periods of incredible mental health and wellbeing.

The researchers Whitaker describes defended their actions by stating that these patients who they were experimenting on had “different points in their illness” or “were not currently ill” and that “it is a stigmatizing view that people with mental illness can’t make that decision.” (As Whitaker discovers, the paper trail tells us otherwise and we discover that there was very little consent.)

To use one doctor’s words (Paul Applebaum, as quoted by Whitaker): “Patients who are having psychotic symptoms often can function quite well in many areas of their lives […] They may have delusions and odd ideas about the CIA investigating their backgrounds, or the FBI trailing them on the street. But that doesn’t prevent them from understanding what they need to buy at the supermarket to make dinner.”

But sadly, it wasn’t the cover-ups, lies, and denials although criminal and disgusting that were a surprise to me, what really was shocking was that these doctors were missing what was right in front of their faces.

These doctors were admitting that their so-called “mentally ill” patients have lucid moments, periods of time where they are not symptomatic. They admitted that these patients were capable of consent. How, then, could they miss that capacity when they locked them in the hospital and drugged them against their will?

What the doctors are not seeing is the health in these people. Or rather, they’re only seeing it when it’s convenient for them and their research projects.

Right there in their own words, they are admitting that people who have delusional episodes also have mental health. This is what they should have been focusing on. This is the way to help people.

I am just finishing up work on a research paper that is about to be put forward for peer review where we collected over 60 stories of people who have recovered from all kinds of mental health diagnoses, including schizophrenia and psychosis, simply because they were guided to see their own health. Understanding how the mind works means that it’s possible to know what the signs are and avoid falling off the cliff into an episode.

We all have the capacity to lose it sometimes but we all have the ability to recognize when we are off and come back to our innate wellbeing. Like learning that when your tummy rumbles it is a signal to eat something, or if you feel pressure in your bladder, it means go pee. Knowing that when our thinking speeds up, becomes urgent, or intense, it’s time to slow down and breathe or if we miss that, we can notice familiar destructive stories showing up. Seeing that these are all signals that we are heading in the wrong direction with our mental health is liberating. The people in our research started to recognize these signals and are now able to choose a better way or ask for help way before it ends up in the emergency room—this is real recovery; this is innate health in action and no pharmaceuticals or torturous surgery needed.

So why couldn’t these doctors see this?

You can call me cynical because I am and yes, it is often money and honor that motivates these researchers. We all know that pharmaceutical companies will pay big bucks for the discovery of new medicines, but I think there is a deeper reason.

Going back to those Nazi doctors, I think they genuinely thought they were doing good. They didn’t see the Jewish, gay, and gypsy people of Auschwitz as human beings. This meant that what they were doing couldn’t be wrong, in fact, it was virtuous to pursue these experiments to help the Aryan race improve and get stronger. It was not just a patriotic duty but honorable scientific endeavor.

But as activist Vera Sharav points out, “these types of experiments could only be done of the powerless.”

Many are made powerless by the misinformation that we are fed. Myths like the chemical imbalance and that so-called illnesses like schizophrenia and psychosis are incurable and will need medications for life. Many of the vulnerable people these American doctors experimented on in places like the University of Massachusetts Medical School who were dealing with first time episodes could have had a very different experience. What if they had been shown that this episode will pass, they were not broken and that they had all the courage and strength they needed to get back on their feet and live amazing lives?

What if the symptoms that these doctors were seeing as evidence of illness, even inhumanity, are actually very healthy alarm signals?

Our bodies are built with incredible wisdom to heal. Our bodies are masterfully made with the ability to fight infections, mend fractures and heal burns. Physical pain is an alarm system to get us help. Why wouldn’t our minds have same ability to regain balance?

Well, it does.

We all have an innate wellbeing system that works by sending us feelings to let us know when we are off, heading in a destructive direction. Feelings are a feedback system just like pain, whether it’s anxiety leading to a panic alarm, depression leading to a fatigue alarm, or personality disorder leading to a self-harm alarm. These are all signals are getting louder and louder that we are heading in the wrong direction. More extreme behaviors like running naked down the street, giving away all your money to strangers, and the smell of feces coming from your neighbor’s apartment are very loud alarm signals to keep us from self-destructing until the calvary arrives.

One of the common criteria for so called illnesses like schizophrenia and psychosis are delusions. I would suggest that these doctors and researchers were themselves suffering severe delusions. To believe that just because someone ends up in a doctor’s office, they have the moral right to experiment on them is willful delusion. If there were a news bulletin saying “Man discovered torturing homeless people by forcing drugs and inserting metal objects into their brains!” we would be horrified and see this person as an insane criminal. But put him in a white coat and fund him with taxpayers’ dollars and he is a researcher.

My friend and mentor, a psychiatrist with 50 years’ experience once told me that in his 20 years of continuing education he didn’t receive one minute of education about mental health.

All alarm signals that so called mentally ill people suffer are cries for help. If only doctors were trained to look for the health in people, to see that we all have innate mental wellbeing and just need guiding, pointing back to our own innate resilience, courage, and wisdom, that would change the world.