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Top reasons why people say they do or don’t volunteer for research

Choosing to volunteer for research is an important personal decision. Each person has their own reasons for choosing or not choosing to volunteer. We’ve put together a list of the most common ones. What’s your reason?

It can be helpful to know that you’re not alone if you’ve never volunteered for a study or if you’re a little nervous about joining one. Let’s look at some concerns people have about research and what can be done to help. If you have more questions about what it’s like to be a study, ask your doctor or the study team. 

1. I don’t have time.  –– It can be hard to add research to busy lives. Everything from travel, to childcare, to time off from work can be a hurdle. Ask the study team if they have appointments before or after work, or if they provide childcare. Some studies may be able to help. 

You can also look for studies that are easier to complete. The Find Studies page can help you search for ones that fit your schedule. 

2. I need more information before volunteering.  –– By visiting this page, you've taken the first step in learning more about research! You may have seen flyers about research studies on a bulletin board or gotten an email about one. You’re interested, but you have questions about safety, privacy, or what it might mean for your healthcare. Find out more here or ask the study team if you have questions about a specific study. 

Explore the studies listed here in Research for Me. If you find a study you’re interested in, check out our list of questions to ask the study team then give them a call. Before you decide to join a study, you can ask as many questions as you’d like. The team is there to answer them all! 

3. I’ve never been asked!  –– Your doctor may not know all the research opportunities that might benefit or interest you. There are trusted sources that help you find them like RFM or clinicaltrials.gov. 

Sometimes doctors don’t ask patients about research opportunities because they may think that their patient won’t be interested.  

If you’re interested in hearing about studies, let your doctor know that you’d like to talk about ones that might be right for you.

4. I’m just not sure I trust researchers. –– There has been a history of medical research abuses that have affected trust in research today. You can read about 2 infamous cases, the Tuskeegee study and the case of Henrietta Lacks here 

Since then, laws and regulations have been put into place to protect research volunteers and patients. It’s also up to us in the research community to be worthy of your trust by addressing your concerns, being clear about study risks and benefits, and respecting your rights.  

You are encouraged to talk about research with family members, trusted members of the community, and your doctor. Their support can help you choose what’s best for you. 

5. I’m not sure what will happen to my health information. –– Every study must have a plan approved by the Institutional Review Board to protect the data they collect. A few of the ways that your research data is kept safe include: 

  • Giving your data a special number so that it won’t be linked to your name or other personal information like an address or phone number 
  • Storing the data in a secured location or in encrypted files (scrambling the data so that no one can read it)    
  • Limiting access to only the study team members who need to use it. 

There are also federal, state, and local laws and regulations that researchers must follow to keep your information safe. 

6. I don’t want to pay to join a research study. –– Some people may worry about getting a bill for research activities, but that is generally not the case. The study team will explain what you might be responsible for if you decide to volunteer.  

7. I’m not sick so I don’t need research. –– Healthy volunteers can help researchers better understand health or provide information that can be compared to someone with an illness. There are many research studies that healthy people can join that are as simple as filling out a survey or more complicated ones that may require medical tests.  

22 August 2022

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