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When you hear about signing up for a clinical trial or being a guinea pig for a research project, there’s no doubt that a red flag pops up in your head. Is it 100% safe? Do these people know what they’re doing? Will they use my DNA to create a clone army?

These concerns are likely caused by the bad rap built from horror experiments of the past that were completely unethical and caused unnecessary pain and suffering for those involved. Here we will discuss some of these problematic and unethical experiments, as well as how ethics has evolved over the years to ensure research participants—animal and human—have rights and are well looked after.

 

Case study 1: The Monster Study

In the late 1930s, the monster study began. It was conducted by Wendell Johnson and Mary Tudor and involved experimentation on 22 orphaned children in Iowa. They had decided to study whether telling non-stuttering children that they stuttered would make it so. Could it be possible to talk children into a speech defect? On top of this, they were trying to determine whether telling stutterers their speech was fine could produce a change.

The children were aged between 5 and 15 and none were told the intent of the study. They instead believed that they were to receive speech therapy. Half of the children received positive therapy—they were praised for speaking well. And the other half received, as you might guess, negative therapy. This involved belittling the children for speech imperfections. Many of the children who received this negative therapy suffered adverse psychological effects and, horrifically, some retained speech problems for the rest of their lives.

There was an account of a 5-year-old who spoke completely fine and then developed difficulties speaking a month into the study. Others told of a 15-year old who became more conscious of herself and talked less and a 9-year-old girl who refused to talk at all. Keep in mind, these children had no problems speaking at the beginning of the study and were made to believe they had a problem. Talk about a mindf***! Reports also showed the children’s grades in school dropped over the course of the study.

Interestingly though, the results of the study went in the opposite direction to what the scientists expected. Of the actual children who stuttered but were told they spoke fine, two showed slight improvements, two decreased in fluency and one was unchanged. Of the six normal children who were forced to believe they were stutterers, three actually improved in speech fluency, two decreased and two were unchanged. But although the scientists answered their research questions, the study had massive psychological effects on the children.

It was dubbed ‘the monster study’ because some of Johnson’s peers were horrified he would experiment on orphaned children. This study is now the subject of a multimillion-dollar lawsuit against the State of Iowa.

 

Case study 2: Nim Chimpsky

Nim Chimpsky was a chimpanzee used in a research project that tried to determine whether chimpanzees can be taught sign language. To do this, researchers believed they had to raise Nim in a human household, where he would live and even eat like a human with his carer’s family. At about two weeks old, Nim was removed from his mother and put into the household of researchers. He enjoyed pancakes for breakfast and even smoked and drank alcohol with his carers. However, he was moved between several of their homes as he got bigger, more aggressive and harder to handle.

Nim did learn some sign language in the end, but after the experiment ended he’d outlived his usefulness. He was sold to a medical laboratory at a time when animal welfare in research wasn’t a top priority. It took a massive effort of public outcry and protests to save Nim and bring him to the sanctuary where he lived out the rest of his life. There was no doubt he was confused about his identity, why the people he bonded with and cared about left him one by one and why he was put in a cage when his whole life he was practically made to believe he was human. At the age of 26, Nim died of a heart attack. There were many issues with the study and you can read more about it here. You can also look up the documentary and multiple books published about Nim.

 

What are ethics?

Ethics, in scientific research, are a set of standards that promote and ensure respect for all animal and human subjects and protect their health and rights. While the main purpose of medical research is to generate new knowledge, this goal should never take precedence over the rights and wellbeing of individual research subjects.

Ethics and medical research have come a long way since the cases described above. And it’s important to note that although the experiments were cruel and conducted unethically, they form the basis of a lot of what we know now.

 

How does current research ensure their study meets ethical standards?

 

Submission Guidelines for South Metropolitan Health Service, Department Human Research Ethics and Governance, South Metropolitan Health Service, 2017.

There are a few differences between animal and human research. However, for both, there are regulating bodies in charge of rigorous policies and procedures to ensure a study meets the ethical and safety criteria before it can be approved to begin. To begin an experiment, you must first create a research protocol outlining exactly what you will be doing with a plethora of specific information including who your subjects will be, how long the research will go on for, where it will be taking place, the risks and benefits, who has access to data and much, much more. An ethics committee will then review your protocol and advise what changes need to be made to ensure the safety and wellbeing of subjects. This process goes back and forth until the committee are satisfied that your study is safe and can take months or even years. Once your study is approved, only then can you begin. Along the way the committee will then monitor you and your project by asking for progress reports and possibly conducting site visits and audits. If anything goes wrong, there are guidelines in place about submitting adverse event reports and how to manage other incidents.

This is just a brief summary of the thorough process that is ethics approval but, as you can see, scientific studies today are very well regulated and monitored. And again, this is to ensure the safety and wellbeing of research subjects comes first and research second. It keeps researchers accountable and creates a substantial plenty of paper trail of records and explanations to look back on if required.

There’s no doubt research that is vital for us to learn more about the world and improve it. Without the studies that have happened and the many people who participated in them, we may not have the information that saves lives and keeps us healthy today. So if you’re ever asked to participate in research, keep an open mind, get as much information about the project as possible, express any concerns or questions to the researcher and hopefully you can get involved, have a great (and safe) experience and contribute to furthering our scientific knowledge!