The Investigators will conduct a longitudinal, mixed-methods cohort study to assess primary and secondary psychosocial outcomes among MyCode adolescent participants and their parents, and health behaviors of children who received an adult- or pediatric-onset genomic result. Data will be gathered via quantitative surveys using validated measures of distress, family functioning, quality of life, body image, perceived cancer/heart disease risk, genetic counseling satisfaction, genomics knowledge, and adjustment to genetic information; qualitative interviews with adolescents and parents; and electronic health records review of children's initiation of risk reduction behaviors. The investigators will also conduct empirical and theoretical legal research to examine the loss of chance doctrine and its applicability to genomic research.
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The Hospital Anxiety and Depression Scale (HADS) - Anxiety Subscale
Timeframe: Baseline
The Hospital Anxiety and Depression Scale (HADS) - Depression Subscale
Timeframe: Baseline
The General Functioning 12-item Subscale (GF12) of The McMaster Family Assessment Device (FAD)
Timeframe: Baseline
Health-Related Quality of Life (HRQOL)
Timeframe: Baseline
Initiation of Risk Reduction Behavior
Timeframe: 6+ months post-disclosure to pediatric proband
The Hospital Anxiety and Depression Scale (HADS) - Anxiety Subscale
Timeframe: 1-month post-disclosure
The Hospital Anxiety and Depression Scale (HADS) - Anxiety Subscale
Timeframe: 6-month post-disclosure
The Hospital Anxiety and Depression Scale (HADS) - Anxiety Subscale
Timeframe: 12-month post-disclosure
The Hospital Anxiety and Depression Scale (HADS) - Depression Subscale
Timeframe: 1-month post-disclosure
The Hospital Anxiety and Depression Scale (HADS) - Depression Subscale
Timeframe: 6-month post-disclosure
The Hospital Anxiety and Depression Scale (HADS) - Depression Subscale
Timeframe: 12-month post
The General Functioning 12-item Subscale (GF12) of The McMaster Family Assessment Device (FAD)
Timeframe: 1-month post
The General Functioning 12-item Subscale (GF12) of The McMaster Family Assessment Device (FAD)
Timeframe: 6-month post
The General Functioning 12-item Subscale (GF12) of The McMaster Family Assessment Device (FAD)
Timeframe: 12-month post
Health-Related Quality of Life (HRQOL)
Timeframe: 1-month post
Health-Related Quality of Life (HRQOL)
Timeframe: 6-month post
Health-Related Quality of Life (HRQOL)
Timeframe: 12-month post
Revised Children's Anxiety and Depression Scale - Anxiety Subscale
Timeframe: baseline
Revised Children's Anxiety and Depression Scale - Anxiety Subscale
Timeframe: 1-month (T2)
Revised Children's Anxiety and Depression Scale - Anxiety Subscale
Timeframe: 6-month (T3)
Revised Children's Anxiety and Depression Scale - Anxiety Subscale
Timeframe: 12-month (T4)
Revised Children's Anxiety and Depression Scale - Depression Subscale
Timeframe: Baseline
Revised Children's Anxiety and Depression Scale - Depression Subscale
Timeframe: 1-month (T2)
Revised Children's Anxiety and Depression Scale - Depression Subscale
Timeframe: 6-month (T3)
Revised Children's Anxiety and Depression Scale - Depression Subscale
Timeframe: 12-month (T4)
General Functioning 12-item Subscale (GF12) of the McMaster Family Assessment Device (FAD)
Timeframe: baseline
General Functioning 12-item Subscale (GF12) of the McMaster Family Assessment Device (FAD)
Timeframe: 1-month (T2)
General Functioning 12-item Subscale (GF12) of the McMaster Family Assessment Device (FAD)
Timeframe: 6-month (T2)
General Functioning 12-item Subscale (GF12) of the McMaster Family Assessment Device (FAD)
Timeframe: 12-month (T2)
Health-Related Quality of Life (HRQOL)
Timeframe: 1-month (T2)
Health-Related Quality of Life (HRQOL)
Timeframe: 6-month (T3)
Health-Related Quality of Life (HRQOL)
Timeframe: 12-month (T3)