222933 Should genetic testing for adult onset disease be extended to children? Parent perceptions of the risks and benefits of testing children for BRCA1/2

Wednesday, November 10, 2010

Angela Bradbury, MD , Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, PA
Linda Patrick-miller, PhD , Cancer Institute of New Jersey, Division of Behavioral Sciences, University of Medicine & Dentistry of New Jersey/Robert Wood Johnson Medical School, New Brunswick, NJ
Colleen Burke Sands, MPH , Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, PA
Helen Schmidheider, BS , Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, PA
Maia Feigon, MA , Department of Medicine, University of Chicago, Chicago, IL
Kimberly Pawlowski, MA , Department of Medicine, University of Chicago, Chicago, IL
Comfort Ibe, MD , Department of Medicine, University of Chicago, Chicago, IL
Fay Hlubocky, MA , Department of Medicine, University of Chicago, Chicago, IL
Olufunmilayo Olopade, MD , Department of Medicine, University of Chicago, Chicago, IL
Mary Daly, MD, PhD , Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, PA
Christopher Daugherty, MD , Department of Medicine, University of Chicago, Chicago, IL
Genetic testing to quantify risks for adult-onset disease is not currently recommended for children. Yet, given the promise of genetic medicine, debate continues over the risks and benefits of testing of minor children (<18YO) for predisposition to adult disease. Many parents (37%) who have had BRCA1/2 testing support testing minors in response to dichotomous query. Parent negative BRCA1/2 test result (p= 0.02), parent male gender (p=0.03) and minority race (p=0.01) are associated with supporting testing minors. To further explore these associations and parents' reported reasons to support or oppose testing minors, we evaluated open-ended responses from interviews with 238 parents. These additional analyses suggest that parents report similar reasons for supporting or opposing testing minors, but weight them differently based on their own test results. Parents with true negative results describe opportunities to foster preventive health behaviors at higher frequencies (43%) than parents with other test results (7.5-13%). Fathers opposing testing exclusively described the lack of medical indication, while mothers more frequently reported psychological risks to testing minors. Non-white participants endorsed medical benefits (45%) at higher rates than white participants (26%). These analyses suggest that biospychosocial factors and genetic test experiences may impact how parents perceive and weight the risks and benefits of testing minors. Parent opinions regarding testing minors remain divided and further research is needed to evaluate the perceived risks and benefits of providing genetic risk information and genetic testing to minors for adult-onset disease is needed to inform clinical practice and guidelines.

Learning Areas:
Ethics, professional and legal requirements
Public health or related laws, regulations, standards, or guidelines

Learning Objectives:
1) Identify potential benefits and risks of providing genetic testing for adult-onset disease to minors (individuals under 18 years old). 2) Discuss biopsychosocial factors and experiences that impact parent opinions regarding testing minors. 3) Identify additional research needed to inform clinical practice and guidelines related to genetic testing of children for adult-onset disease.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present this material because I have overseen recruitment and data collection for this and other behavioral health studies and contributed to the analysis of the data for this poster and several other manuscripts and presentations.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 5021.0: Child Health Poster Session