Family relations in the genomic era

Abstract

Interest in the familial aspects of disability has heightened in recent years. Three forms of disabilityhearing loss, Fragile X syndrome, and autism spectrum disordersare used here to illustrate the complex and rapidly evolving understanding of the meaning and nature of heritability and carrier status for disability. The authors raise six questions to address if the promise of genomic research leads to real benefits for families: (a) Is the public interested in carrier testing? (b) Who is responsible for carrier testing? (c) Is the public prepared to use genomic information? (d) Should genomic testing or information about testing be tailored to specific audiences or target populations? (e) What strategies can be used to enable informed decision-making? (f) How will carrier testing affect family relationships and communication patterns? These and other factors will require a comprehensive analysis of the individual and societal implications for family relations in the genomic era