Don’t get Tricked: How to Spot Unethical Research Solicitations

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Have you ever seen a post where someone is asking you to participate in a survey? Those casual data collections are illegal in the United States. Let’s say that you get an email from the vet you just took your pet to. They are asking for you to complete a survey about the quality of their service. If they are using it for internal purposes to better their practice, then you have a choice whether you want to donate your intellectual property to a business that has all the resources to learn from formal avenues. You also cannot guarantee that your responses would be held confidentially. For that reason, I advise people to let businesses police themselves without taking advantage of people. 

Suppose you see a post in an Autistic adult facebook group. Somebody is sharing that they are doing a ‘project’ for their college thesis. Be aware: Undergraduate students do not conduct research. Graduate students sometimes have research ‘projects’ but rarely is published research required in their degree program. In doctoral programs, students are subject matter experts who will go through rigorous training in ethics of research with human participants, laws pertaining to confidentiality, the current rules about the use of deception, and the requirement to provide information about their approval to conduct research. 

Institutional Review Boards (IRBs) are committees that ensure research involving human subjects is ethical and safe. They review research plans to protect participants and ensure compliance with regulations. IRBs can approve, modify, or disapprove studies based on these criteria. Every university that requires students to conduct -AND- publish research also has an IRB onsite. The IRB is typically a group of professors who are trained in the most recent laws and regulations about human participants. Even if your research does not collect data from human subjects, you as a researcher will still need to apply and receive IRB “exemption”. You cannot use the IRB approval to conduct more than one study, and the data collection and study must match the purpose of your application. 

After the IRB processes your application, you will get an approval certificate which will have an internal tracking number. That is to ensure there is no fraud, and also to have a reference if people contact your university with complaints about your conduct. The certification and/or the IRB contact information ABSOLUTELY MUST be a part of the post, or recruitment landing page or recruitment material. Do not even click on anything that is lacking IRB information, because even your clickthrough might be used for research, possibly to test how many people click to participate depending on the nature of the graphics and wording. Horrifying, right?  

My goal in writing this for my readers is to help them choose to participate in a project that is not IRB approved. Those are unethical and legal in many countries. On this page published by the NIH, you can read about the history of how human subjects came to be protected from experimentation, and identify three population groups that are considered vulnerable, and forbidden from researching: pregnant people, prisoners, and developmentally disabled people. This stems from the terribly dark history with what happened at Willowbrook, a state institution exposed 50 years ago. You may wonder about this if you are Autistic. Since the DSM-5 changed the diagnostic criteria for an Autism Spectrum Disorder in 2013, Autism no longer requires an intellectual disability to be considered. For that reason, Autistic people are no longer excluded from participating in research and are considered capable of proving informed consent. Still, as an Autistic autism researcher, I maintain a rigorous schedule of renewing my certification about ethics with human participants every four years as required. I hope this article helps you identify red flags. 

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Be a Part of Change: Autism Study Database for Autistic-Led Research

We no longer want to study medical autism. Autistic-led research is about the quality of life and out lived experience. We are compiling a database of people who want to be notified when an Autistic researcher is looking for participants. All we need is your email address, which we will keep private. 

This is important for science

Help us advance autism research by joining our Autism Study Database! By contributing your unique experiences, you’ll play a vital role in improving understanding, shaping future care, and driving meaningful change in the autism community. In large numbers we can make a lasting impact. 

Who can Subscribe: You must either be Autistic yourself or have an Autistic loved one, or be a professional working with Autistic people. You may choose multiple. 

Benefits:

Your privacy is our priority—your information will remain confidential. You’ll receive occasional emails about research studies, with the option to opt out at any time. While there is no financial compensation, you will be informed when important research findings are published.

“Call me maybe…” If you have questions pertaining to the way this information will be used, don’t hesitate to contact henny@hennyk.com. This call to action is on every social media platform. Look for #doogridatabase or #autisticautismresearch to find and share.  

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