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NIH Sep 30, 1997 | R01
Minors At-Risk of Future Disease: Their Role in Research
Institution: Johns Hopkins Medical Institutions
FOA Number: RFA-OD-97-001
Abstract
This study will explore the process by which families at increased risk of adult-onset disease decide to involve their children in research on genetic susceptibility. Through interviews with parents at increased risk for heart disease and breast cancer, their children between the ages of 10 and 17, and the physicians they identify as influential, this study will explore perceptions about the motivations and barriers to participation of children in research on genetic susceptibility to these two diseases. In addition to comparing two diseases, the study will compare families from different cultural backgrounds (African-American, Jewish and Caucasian non-Jewish) and children at different stages of cognitive development. Follow-up family interviews will be conducted one year after the initial interview. The results of these qualitative interviews will be used to develop criteria for assessing the adequacy with which recommended elements of consent and assent for children's participation in disease susceptibility protocols have been addressed. (Informed Consent RFA. Co-funded)
FUNDING AGENCY:
Funder:
NIHInstitute:
EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENTFunding Type:
R01Project Number:
R01HD036189Start Date:
Sep 30, 1997End Date:
Aug 30, 2000PROJECT TERMS:
adolescence (12-20), African American, age difference, breast neoplasms, caucasian American, child psychology, Clinical Research, Counseling, culture, Decision Making, disease /disorder onset, disease /disorder proneness /risk, family genetics, heart disorder, human subject, Informed Consent, Interview, Jewish, middle childhood (6-11), Motivation, Perception
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