For Patients: Saw an ad for research? (NHEW 06.03.2014)
This is last of a series of posts for the 2016 National Health Ethics Week (NHEW). To mark this special week, I wrote one post a (week)day about medical research – for patients.
I work in bioethics, also called biomedical ethics, or sometimes healthcare ethics. But I’m doing this in my free time, not as part of my job. I hope this information was helpful!
In my last post, we talked about Signing forms for research. Now I want to talk about what comes before that. About how people find out about research studies. Sometimes your doctor, or nurse, will talk to you about a medical research study.
But sometimes you’ll see an ad for a research project. They can be in newspapers, on tv or the radio, on buses or bus shelters. Sometimes in magazines, or the Internet, or even on billboards. Just like ads for anything else – they can be anywhere these days!
Why talk about ads for research projects? Because the doctors and nurses running them are supposed to follow some rules when they place ads for research. The US government’s FDA says* that these ads are the start of the ‘informed consent process’. That’s what we talked about in yesterday’s post.
The FDA also says* these ads can’t be “unduly coercive” or “promise a certainty of cure”. Coercive means getting someone to do something they don’t really want to do. This can be done in many ways. It could be a threat, or an offer of a lot of money. Like when someone’s to kill someone else in a movie: “I’ll give you a million dollars to run over Joe”, or “If you don’t run over Joe, I’ll run over your son”.
And something that seems good can be coercive, too. Like an ad for a research study that says it can can cure a disease. Or one that says it can make someone live longer. Like the saying “If it seems to good to be true – it probably is!”
And something can be coercive in smaller ways. It can be offering more money for something than what it’s worth. If an ad offers money to be in a research study, it should be to cover your time. The amount is supposed to be close to minimum wage in that area. For all the time a person in the study would have to spend on it.
There may be a few visits to the study doctor or nurse. There could forms to fill in. Questionnaires to do. Maybe some medical tests, like x-rays or scans. They may have to take blood samples. Some research projects will pay you for your time in the study. But if the ad says they’re paying $5,000.00 an hour, that’s coercive. It’s using money to try to get someone to do something.
And that’s not allowed in research.
If you see an ad for research, and want information, ask for it. You can ask questions about research projects. It’s your right to ask questions. And if there’s something that you don’t understand – ask about it. Part of the job of the research team is to answer questions.
If you see a research ad at a clinic or hospital, you can ask to take a copy home with you (if they have any extras). You’re allowed to talk with your family and loved ones, before you decide. And if you decide to be in the study, you can stop whenever you want. But sometimes you’ll have to stop slowly. That’s because some medications have to stopped slowly. For some of these, it could make you sick to stop all at once. Always check with a doctor or pharmacist before stopping any medication!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
* U.S. Food and Drug Administration (FDA). Recruiting Study Subjects – Information Sheet: Guidance for Institutional Review Boards and Clinical Investigators. Accessed 01 Mar 2014. Web: https://www.fda.gov/RegulatoryInformation/Guidances/ucm126428.htm