Recently there’s been a lot of news coverage of clinical trials for COVID-19 vaccines. Reading the headlines can give a scary impression of what clinical research is and what the potential outcomes are. In reality, there are many types of clinical research and many ways to participate – some as simple as taking surveys. It is important to be fully informed and make the decision that is best for your child.
What is Research?
Put simply, doctors and scientists know a lot but are always trying to learn more. They are looking for new cures, better treatments, or a better understanding of a disease or condition. The way they learn more is by doing research.
Why was My Child Asked to Participate?
Your child may be asked to participate because they have a certain disease or condition. Or, they may be asked to participate as a “healthy control.” You can also seek out ways to participate by checking hospital websites, Craig’s List, local Facebook pages, or the ClinicalTrials.gov website.
Types of Research
Clinical research could involve testing out a new vaccine, or other medical procedures like getting an MRI or taking a new medication. But research can also involve less-invasive tasks like filling out a questionnaire, tracking step counts, participating in a focus group, or testing a new device. You can read more about different types of research here.
Additionally, there is a wide variety in where you can participate in research (like at a doctor’s office, from home, or online), as well as who pays for research (a drug company, the government, or a philanthropic foundation), and how long it takes (anywhere from five minutes to many years). The researchers should clearly explain the details of the study to you.
Giving Informed Consent
The research consent form is a paper or electronic document that will tell you about the study. Primarily, the study team should focus on explaining to you things like the study procedures, the potential risks and benefits, and alternatives to participating. Take time to consider your decision to participate. If your child is under 18, you will most likely need to provide permission for them to participate, although in certain studies teenagers can participate without parental consent.
Questions to Ask Yourself
Do we have time for this?
Some studies involve one-time participation; others occur over months or even years. You may be able to participate from home, or you may need to make extra trips to the doctor’s office. Consider whether the research study fits into your life.
Does my child want to participate?
Do they love filling out surveys or will you have to nag them? Will it give them access to a new treatment that might improve their quality of life? Are they interested in science and want to learn more? Would they love to be rewarded with a study gift card?
Do I understand the risks?
If there are risks involved, the researcher should be very clear about what they are. Ask questions so you fully understand the study.
What does my gut say?
Trust your instincts. If you are unsure or feel pressured, ask for more time to consider your decision or just say no. If it seems like an interesting and well-run study, participating in research can be a great way to contribute to the greater good and to teach your child about science.