For families who have a child or other family member with a genetic disease or are at risk for a genetic disease that may be incurable, the psychosocial and financial consequences can be significant.
The decoding of the human genome is causing a myriad of changes in the way we think about health and illness.
Individuals, families and health care providers are being bombarded with news of genetic and genomic advances at every turn. Huge amounts of information and invitations for testing are available directly to the consumer on the Internet.
Genetic Information
Non-discrimination Act
Despite the passage of the Genetic Information Non-discrimination Act [GINA] in 2008, which prohibits refusal of insurance or discriminatory use of genetic information, issues about confidentiality and discrimination still exist. Survivor and transmitter guilt have been described in the professional literature and anecdotally. Individuals and families may be in need and may benefit from a support group.
The ANA/ISONG Statement of Scope and Standards of Genetic Clinical Practice is a recommended resource for all nurses integrating genetic health care as part of their practice.
