Information for Research Participants
Office for Human Research Protections Brochures: Becoming a Research Volunteer: It's Your Decision Ser Voluntario en Estudios Clínicos: Es Su Decisión
What is Research
When most people are asked about research, they think of scientific or medical research –and with good reason. Right now, there are more than 40,000 medical research studies underway. But research takes other forms, too. Some studies use questionnaires, interviews, or other types of surveys to gather information about habits, opinions, and beliefs. Other studies observe the way people interact with one another or react to certain situations, providing new insights into human behavior.
What do all forms of research have in common? All seek knowledge for the public good. Many would not be possible without human participants.
Benefits and Risks
One way or another, all of us have benefited from research. The vaccines that help prevent diseases and the medications that help manage symptoms are just a few examples of scientific discoveries that resulted from research. Many of the psychological and social support services that we routinely provide to victims of trauma and disaster also were developed in response to research findings.
It’s important to note, however, that research is experimental, and that means it involves risk. The federal government requires researchers to inform participants about the risks involved – and to do everything possible to minimize those risks. Even so, risk can never be completely avoided.
Deciding to Participate
The decision to participate in a research study is a personal one. Certainly, it is helpful to discuss your options with researchers and your family, but ultimately the choice is yours. Very often it comes down to whether you believe the potential benefits of the study outweigh any potential risks.
There are a number of reasons why people choose to participate in research:
- Some suffer from life-threatening medical conditions and view research as their last hope. So they agree to help test new drugs or medical devices in research studies known as clinical trials.
- Some feel strongly about the importance of research and the value of its findings. They choose to participate to advance knowledge and understanding, not just about science and medicine, but also about the human condition – how and why people respond to one another and the world around us.
Of course, there are other reasons as well. But no matter what the reason, it is important that your decision not be made lightly.
The following individuals/offices can assist you with questions or concerns regarding human participants research at UW-Madison.
- The researcher or research staff (see consent form for contact information)
- The relevant Institutional Review Board (see consent form for contact information)
- Confidential Human Research Protection Hotline: 608-890-1273 or firstname.lastname@example.org
- The UW Hospital and Clinics Patient Relations Representative at (608) 263-8009
- Madison Veterans' Affairs (VA) Hospital Patient Advocates
Consent and Assent
Before your child can be enrolled as a participant in a research project, parental consent and assent must be obtained.
Parental consent is required for all minor research participants. You will likely be provided with a written form with the following information:
- Information about the research study
- Description of what your child (and you) will be asked to do to participate
- Description of any risks or benefits to participating
- Information on how to enroll and withdraw from the study
- Contact information if you have questions
- A signature line to indicate your consent for your child’s participation
Once parental consent is obtained, minor participants are asked to agree to participate by providing assent. Assent can only be obtained after parental consent is obtained. Your child may be asked to provide oral (spoken) assent or written (signed) assent, depending on their age. Just because you have consented to your child’s participation, your child can still decide not to participate.