Medical research needs kids, but parents not aware of opportunities

November 26, 2013 Volume 19 Issue 5
  • 5% of parents say their children have taken part in medical research.
  • 44% of parents would consider allowing their children to participate in medical research if their children had the disease being studied.
  • Parents who are aware of medical research opportunities are more likely to have their children take part in medical research if the research is related to an illness their children have.

When children benefit from vaccinations, new medications, or new diagnostic tests, they are experiencing the advantages of medical research. Without adults and children taking part in medical research, few major advances in healthcare would be possible. Yet, prior estimates of children’s participation in medical research have indicated that only about 1 in 20 families has a child who has taken part. Understanding parents’ willingness to allow their children to participate in medical research, and under what conditions, may help develop research options that are more appealing to families.

In June 2013, the C.S. Mott Children’s Hospital National Poll on Children’s Health asked a national sample of parents about past and future opportunities for children to participate in medical research. Parents were also asked how likely they would be to have their children participate in medical research if the research was related to a disease that their child had.

Awareness of Medical Research Opportunities for Children

Only 5% of parents say their children have ever participated in any type of medical research. Parents of children with chronic diseases are more likely to have had their children participate than parents of children without a chronic condition.

Among parents whose children have not participated in medical research, 4% indicate they have received an invitation for their child to participate; another 24% of parents recall seeing or hearing about opportunities for children to participate in medical research.

Children’s Participation in Future Medical Research

Overall, 44% of parents indicate they would consider allowing their children to participate in medical research if he/she had the disease being studied.

Nearly one-half of parents are willing to have their children take part in research that involves testing a new medicine or a new vaccine. More than three-quarters of parents are willing to have their children participate in research involving questions about mental health eating or nutrition (see Figure 1).

Parents whose children have previously participated or are aware of opportunities for children to participate in medical research are more likely than other parents to be willing to have their children participate in medical research in the future, if their children have the disease being studied.

Parents are less likely to be willing to have their children participate in medical research as healthy volunteers; 1 in 5 parents say they would consider letting their children participate in medical research as a healthy volunteer, if the risks were low.

Implications

The National Poll on Children’s Health has been measuring levels of participation by children in medical research since 2007. The proportion of families whose children have taken part in research has not changed over this time period – from 4% in 2007, to 5% in 2011, to 5% in this latest poll. At a time when adults across the country express concerns about cancer, diabetes, and the safety of medications and vaccines for children (see NPCH Report on top research priorities), it is critically important to have children and families who are willing to participate in research to address these questions.  Five percent of families with children are unlikely enough to support such important research efforts.

On the other hand, nearly one-half of parents in this poll indicate that they would be willing to consider having their children participate in medical research if their children had the condition being studied. The willingness to have children take part differs by the type of study—higher for studies involving questions; lower for studies involving exposure to a new medicine or vaccine. Nonetheless, the high proportion of willing parents, compared with the low proportion of parents whose children have participated previously, is what can be called an “opportunity gap” in medical research for children.

To close this opportunity gap and increase the proportion of children advancing healthcare by taking part in medical studies, the research community will need to enhance its ability to reach parents with information about opportunities for children to participate, answer parents’ questions about benefits and risks of participation, and potentially broaden the types of studies available. Many research universities, and the National Institutes of Health, are actively trying to expand medical research options for children—especially for children with chronic illnesses who stand to benefit so much from advances in care. 

Data Source

This report presents findings from a nationally representative household survey conducted exclusively by GfK Custom Research, LLC (GfK), for C.S. Mott Children’s Hospital via a method used in many published studies. The survey was administered in June 2013 to a randomly selected, stratified group of parents age 18 and older with a child age 0-17 (n=1,420) from GfK’s web-enabled KnowledgePanel® that closely resembles the U.S. population. The sample was subsequently weighted to reflect population figures from the Census Bureau. The survey completion rate was 51% among the panel members contacted to participate. The margin of error is ± 1 to 3 percentage points and higher among subgroups.

C.S. Mott Children’s Hospital National Poll on Children’s Health
Director: Matthew M. Davis, MD, MAPP
Associate Director: Sarah J. Clark, MPH
Manager & Editor: Dianne C. Singer, MPH
Data Analyst: Acham Gebremariam, MS
Web Editor: Anna Daly Kauffman, BA

Findings from the C.S. Mott Children's Hospital National Poll on Children's Health do not represent the opinions of the investigators or the opinions of the University of Michigan. The University of Michigan reserves all rights over this material.

Questions were answered by adult respondents age 18 and older with a child age 0-17.

Medical or clinical research helps scientists and doctors learn new things about medical care.

Medical research can focus on many different things, including:

  • new drugs or vaccines
  • medical devices
  • medical procedures
  • effects of behavior on health
  • effects of the environment on health
  • how our genes and DNA can affect health

Q1. Has/have your child(ren) ever participated in any type of medical research?

  • Yes, once
  • Yes, more than once
  • Tried, but was/were not able to participate
  • No

Q2. Has/have your child(ren) ever been invited to participate in any type of medical research?

  • Yes
  • No

Q3. Have you heard about or seen opportunities for children to participate in medical research?

  • Yes
  • No

Q4. Please think about different types of medical research that child(ren) could take part in, described below. 

For each type of research, all costs of health care directly related to the research would be covered.  Your family would pay nothing for the research or for related medical care.

How likely would you be to have your X-year-old child take part in the following types of medical research, if the research was related to a disease that he/she had?

Study of... Very likely Somewhat likely Not likely
a new medicine      
a new vaccine      
questions about their eating or nutrition      
questions about their mental health      

Healthy volunteers can provide researchers with important information for comparison with people who have specific diseases.

Q5. Would you consider letting your children participate in medical research as a healthy volunteer, if the risks were low?

  • Yes
  • No
  • Unsure

Q6. Would you consider allowing your children to participate in medical research if he/she had the disease being studied?

  • Yes
  • No
  • Unsure

Participants were also asked demographic questions on gender, race/ethnicity, annual household income, education and insurance status.

All information is the sole property of the University of Michigan C.S. Mott Children's Hospital National Poll on Children's Health.  It can only be used if there is an acknowledgment that "The information came from, is copyright by and is owned by and belongs to the Regents of the University of Michigan and their C.S. Mott Children's Hospital National Poll on Children's Health. It cannot be republished or used in any format without prior written permission from the University."

C.S. Mott Children’s Hospital National Poll on Children’s Health
Director: Matthew M. Davis, MD, MAPP
Associate Director: Sarah J. Clark, MPH
Manager & Editor: Dianne C. Singer, MPH
Data Analyst: Acham Gebremariam, MS
Web Editor: Anna Daly Kauffman, BA

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Proportion of parents willing to have children participate in medical research

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