Parents' and children's attitudes toward the enrollment of minors in genetic susceptibility research: implications for informed consent.
OBJECTIVE
Children at high risk of future disease may be recruited for participation in disease susceptibility research involving genetic testing. This study was aimed at assessing parents' and children's reactions to such research, and their perceptions of risks and benefits of participating.


METHODS
Parents and children (ages 10-17) from families at increased risk for breast cancer (n = 16 dyads) and heart disease (n = 21 dyads) participated in separate audiotaped interviews and a follow-up family interview one year later. We asked about reactions, risks and benefits, and informational needs regarding participation in hypothetical research involving genetic testing on a saliva sample. Audiotape transcripts were analyzed qualitatively.


RESULTS
All children would initially participate because they viewed the research as low risk. When thinking about learning their test result and sharing it with others, or the uncertainties of testing, many children became hesitant about participating. Many parents thought their child might worry about a positive result, making them unlikely to enroll their child, or to choose not to tell the child test results. Both children and parents thought the benefits of participating included early detection or treatment (breast cancer families), prevention (heart disease families) and helping others. Children's questions about research participation centered on details of the study design and purpose, while parents' questions related to the genetic test itself.


CONCLUSIONS
Children's first reaction to participating in research involving genetic susceptibility testing research may not indicate an adequate appreciation of risks and benefits; if encouraged to personalize the impact of genetic testing, children are able to engage in a more informed decision-making process.
Bernhardt
Barbara A
BA
Department of Pediatrics, Johns Hopkins School of Medicine, New York, USA. bbernhardt@welch.jhu.edu
Tambor
Ellen S
ES
Fraser
Gertrude
G
Wissow
Lawrence S
LS
Geller
Gail
G
D000293:Adolescent; D000328:Adult; D001290:Attitude; D001943:Breast Neoplasms / Q000209:etiology / Q000235:genetics*; D002648:Child; D004992:Ethics, Medical; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000523:psychology*; D006306:Health Surveys; D006331:Heart Diseases / Q000209:etiology / Q000235:genetics*; D006805:Human Experimentation; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D016743:Mental Competency; D008875:Middle Aged; D009034:Mother-Child Relations; D010358:Patient Participation; D011247:Pregnancy; D012107:Research Design; D012307:Risk Factors