. 2021 Dec 24;23(12):e26684. doi: 10.2196/26684

Table 2.

Overview of studies that investigated the impact of interventions on improving the knowledge and understanding of genetic concepts.

Study	Aims of the research	Pretest results	Posttest results
Newcomb et al [3]	Whether an original children’s book called “What DNA Does,” designed as a visual aid to assist in the assent process for children enrolling in genetic testing research, could increase the child’s and parent’s understanding about “DNA” and “genes” and whether children reading the book with a pediatric nurse would result in a better understanding of genetic concepts than reading the book with a parent.	Median GKI^a score was 4 (0=all incorrect and 5=all correct), with 54% of respondents making only 1 incorrect response; most difficult item: “Racial differences in academic ability are caused by genetics.” Both parents’ and child’s understanding of the terms was minimal before reading the book; no participants mentioned learning about genetics or DNA in school. A total of 65% (17/26) of parent respondents said they did not know what DNA was or stated vague or inaccurate definitions. None of the child respondents was able to explain DNA in simple terms, although some were able to repeat phrases they had heard. The primary recurring theme in the conversations about DNA before reading the book was “blood”; both children and parents expressed the idea that DNA is somehow closely related to or is a part of blood and that blood has something to do with human identity.	GKI was not completed after the test. After reading the book, most children had more articulate and accurate understandings of “DNA,” but no better understanding of its function; 2 children were more confused after reading than before. Children who read the book with a nurse had a better understanding of DNA’s function than those who read it with a parent. Increased accuracy of describing the meanings of DNA and gene was demonstrated by all the participants in the nurse–child–parent reading group and in two-third of the children in the parent–child reading group.
Johnson et al [41]	Whether a 2-step consent using a structured communication model would improve the knowledge and understanding of key genetic concepts among parents of children with cancer. The model involved a single study nurse who approached and obtained consents from the families with a standardized script, an informational cover sheet, and baseline pretest responses to educate parents on genetic concepts during the study introductory visit. At the subsequent informed consent visit, the nurse used a checklist and an informed consent document to review and reinforce concepts.	More than 85% of the parents identified correct answers to 4 of 11 genetic concepts; most knew that “genes are made of DNA,” “genetic risk is the chance of having an inherited (passed down) disease or disorder,” “healthy parents can have a child with an inherited disease,” and “genomic testing of your child’s tumor and healthy tissue may teach you things about (multiple choice responses).”. Baseline understanding of differences between somatic and germline mutations was poor; 31% of parents answered correctly, “nontumor (germline) mutations are in every cell of your body,” and 18% answered correctly, “tumor (somatic) mutations are only found in cancer cells.”	After completion of the 2-visit intervention, correct responses increased significantly for 9 of 11 genetic concepts and overall genetic knowledge; the median percentage of total correct answers improved from 77.8% to 88.9%. The rate of understanding that somatic mutations are only found in cancer cells increased from 18% to 59% and understanding that germline mutations are found in every cell of the body went from 31% to 64%. No association was detected between the change in the overall percentage of correct answers and parental numeracy, literacy, or sociodemographic factors.

Study

Aims of the research

Pretest results

Posttest results

Newcomb et al [3]

Whether an original children’s book called “What DNA Does,” designed as a visual aid to assist in the assent process for children enrolling in genetic testing research, could increase the child’s and parent’s understanding about “DNA” and “genes” and whether children reading the book with a pediatric nurse would result in a better understanding of genetic concepts than reading the book with a parent.

Median GKI^a score was 4 (0=all incorrect and 5=all correct), with 54% of respondents making only 1 incorrect response; most difficult item: “Racial differences in academic ability are caused by genetics.”
Both parents’ and child’s understanding of the terms was minimal before reading the book; no participants mentioned learning about genetics or DNA in school.
A total of 65% (17/26) of parent respondents said they did not know what DNA was or stated vague or inaccurate definitions.
None of the child respondents was able to explain DNA in simple terms, although some were able to repeat phrases they had heard.
The primary recurring theme in the conversations about DNA before reading the book was “blood”; both children and parents expressed the idea that DNA is somehow closely related to or is a part of blood and that blood has something to do with human identity.

GKI was not completed after the test.
After reading the book, most children had more articulate and accurate understandings of “DNA,” but no better understanding of its function; 2 children were more confused after reading than before.
Children who read the book with a nurse had a better understanding of DNA’s function than those who read it with a parent.

Increased accuracy of describing the meanings of DNA and gene was demonstrated by all the participants in the nurse–child–parent reading group and in two-third of the children in the parent–child reading group.

Johnson et al [41]

Whether a 2-step consent using a structured communication model would improve the knowledge and understanding of key genetic concepts among parents of children with cancer. The model involved a single study nurse who approached and obtained consents from the families with a standardized script, an informational cover sheet, and baseline pretest responses to educate parents on genetic concepts during the study introductory visit. At the subsequent informed consent visit, the nurse used a checklist and an informed consent document to review and reinforce concepts.

More than 85% of the parents identified correct answers to 4 of 11 genetic concepts; most knew that “genes are made of DNA,” “genetic risk is the chance of having an inherited (passed down) disease or disorder,” “healthy parents can have a child with an inherited disease,” and “genomic testing of your child’s tumor and healthy tissue may teach you things about (multiple choice responses).”.
Baseline understanding of differences between somatic and germline mutations was poor; 31% of parents answered correctly, “nontumor (germline) mutations are in every cell of your body,” and 18% answered correctly, “tumor (somatic) mutations are only found in cancer cells.”

After completion of the 2-visit intervention, correct responses increased significantly for 9 of 11 genetic concepts and overall genetic knowledge; the median percentage of total correct answers improved from 77.8% to 88.9%.
The rate of understanding that somatic mutations are only found in cancer cells increased from 18% to 59% and understanding that germline mutations are found in every cell of the body went from 31% to 64%.
No association was detected between the change in the overall percentage of correct answers and parental numeracy, literacy, or sociodemographic factors.

^aGKI: Genetic Knowledge Index.