Whole genome and exome sequencing techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, (...) how, and when these secondary or incidental findings should be returned to parents and minors. The debate is even more pronounced when the subjects are adolescents, for whom decisions about return of SFs may have particular implications. In this paper, we consider the rise of “genomic citizenship” and the main challenges that arise for these stakeholders: adolescents' involvement in decisions relating to return of genomic SFs, the types of SFs that should be offered, privacy protections, and communication between researchers and adolescents about SFs. We argue that adolescents' involvement in genomic SF-related decisions acknowledges their status as valuable stakeholders without detracting from broader familial interests, and promotes more informed genomic citizens. (shrink)

New developments in genetics could affect a variety of real property rights. Mortgage lenders, mortgage insurers, real estate sellers, senior living centers, retirement communities, or other parties in residential real estate transactions begin requiring predictive genetic information as part of the application process. One likely use would be by retirement communities to learn an individual's genetic risk for Alzheimer's disease. The federal Fair Housing Act prohibits discrimination based on disability, but it is not clear that it would apply to genetic (...) risk assessments. Only California law explicitly applies to this situation and there have been no reported cases. (shrink)

To promote informed reproductive decisions, prenatal carrier testing is offered to women and couples to provide information about the risk of having a child with one or more genetic conditions. Tay Sachs Disease was one of the first conditions for which prenatal carrier testing was developed. Today, many additional conditions can be tested for, depending on prospective parental interest, family history, or ethnicity. Interestingly, most individuals and couples do not request prenatal carrier information prior to conception, and carrier testing early (...) in gestation allows only a narrow set of reproductive options. Programs have been designed to increase preconception testing, with variable success. One of the more successful attempts to increase preconception carrier testing uptake internationally has been to offer it to adolescents in high schools. (shrink)