Participation Considerations /

Minority Interests and Questions

It is amazing that human beings are so much alike. Only one-tenth of one percent of our genes varies from one person to the next. But even with these tiny differences, there are still people with different appearances and different health conditions. Illnesses affect each of us differently—as individuals, as families, as racial and ethnic groups, and as communities.

That’s why it is important to include all types of people in clinical studies.

Getting information

No matter what their educational level, how much money they have, what language they speak, or where they live, all parents care about their children. However, if you are a member of a minority group, what’s important to you—or what concerns you—may be different from what is important to another parent.

  • Some parents find it hard to ask medical people questions.
  • Some may be concerned that research means “experimenting” or that doctors and nurses doing research only care about using children to help themselves.
  • Some parents have had a bad experience at the hospital or clinic and think something bad could happen to their child also.
  • Most parents have problems understanding the words or ideas in the long consent forms given to them for the study.
  • Others may be uncomfortable with a study team that is “different” from them or doesn’t speak their language.
  • Many parents may not know what a clinical study is.

These are very real and important concerns. And no one should feel uneasy about being in or asking any questions about a clinical study.

The doctors and nurses know that you are worried about your child and may be unsure about joining a study. They are glad when you ask questions and take control of your child’s healthcare. No one expects parents to understand the medical terms or even understand at first what a study is about. Just ask questions until you get the answers that you understand.

Remember that much work has been done to make sure people are protected in studies especially children. But even with these safeguards, there still may be risks. Be comfortable with the study documents and ask if things are not clear.

Role of Community

Sometimes you may wish to talk with your family or friends about joining a study. They too may be unsure of what a study is or what happens. So while you talk to your family and friends, also do your homework and get informed. Remember that one day, another parent might ask you to help them with their decision, and you will want to be as informed as you can to help them.

Reach out to others who may help you make decisions. Bring family members or church friends with you to talk about the study. There are parent advocates and community advocates who can help you understand the role of the research and what it means for you and your child.

Feeling Connected

The most important thing is that you feel connected and part of the team and that you feel you are doing what is best for your child. You need to know your child is safe and will receive the best care.

  • Feel comfortable asking questions.
  • Get to know your study team. They should earn your trust and be respectful, fair, and supportive of you and your child.
  • Learn what happens if you withdraw from the study or when the study ends. Will you still get the medicine or medical care?
  • Ask how the study team can help you if you need childcare, an interpreter, transportation, or to take time off work.
  • And always remember: it is okay to ask.

"It's important to have a group that reflects what we look like in the United States. So that when they say this is what's going to happen, you can say safely that's what happens in all of the people that we study, and you have a real sense of the impact of differences for ethnic minorities."

Renee Jenkins, Pediatrician, American Academy of Pediatrics President, 2007-2008

"We really trusted him [the study doctor], and I mean he [has] always been doing the right thing for us. And as far as the paperwork was concerned he was there with us."

Sharda, mother of child in kidney disease study

"Sometimes it's not easy because maybe [parents] might feel like they're not gonna be treated the same way, and they're fearful of saying no. But what my advice to you whenever you get information that you're not sure of to just go read go back and ask the same doctor."

Erica, mother of child who did not enroll in clinical study