200150 Genomic information and children's identity development: A review of the literature

Tuesday, November 10, 2009: 4:53 PM

Christopher Wade, MPH, PhD , Social and Behavioral Research Branch & Genome Technology Branch, NHGRI, National Institutes of Health, Bethesda, MD
Benjamin Wilfond, MD , Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital, Seattle, WA
Colleen McBride, PhD , Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD
One possible method of integrating genomic information into public health practice is to offer susceptibility testing for health related-conditions as part of standard prenatal, newborn, or pediatric care. This approach may be especially beneficial for primary prevention because many risk factors for common health conditions arise in early life. However, several concerns have been raised about genetic testing of minors, including the potential negative implications that knowledge of genetic susceptibilities might have on children's identity formation. To consider the evidence underlying this concern, we conducted an extensive review of the literature to identify studies that offered health-related genetic test results to minors without existing symptoms. Out of 8,429 articles retrieved from multiple databases, a total of 13 articles were found that met the selection criteria. These studies were conducted in the context of carrier or predictive testing and used a wide range of methodologies. When quantitative measures were employed, there was little indication that genetic testing significantly changed self-related constructs. Research that used qualitative approaches revealed that minors integrate genomic information into their self-identity in complex ways that may not be adequately addressed by existing standardized measures. Our results indicate that while genomic information is unlikely to have a major impact on minors' global self-identity, it will be necessary to develop rigorous approaches to examine the more subtle ways that genomic testing could influence identity development.

Learning Objectives:
1) Describe the potential benefits and harms of offering genomic testing to minors. 2) Evaluate whether existing evidence supports the claim that knowledge of genomic information would alter children's identity development.

Keywords: Children and Adolescents, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I currently hold a doctorate in molecular biology and masters in public health. My postdoctoral fellowship focuses on the implications of providing genetic susceptibility testing about health information to the public. In examining this question, I primarily apply ethical principles and use social and behavioral research methods. I have also conducted an extensive literature review to examine articles that assess the impact of genetic information on minors, the findings of which would be discussed in this presentation.
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.