Patient privacy is extremely important to us and great care has been taken to institute a procedure that protects a participants sample and genetic data derived from it. All genetic and medical data will be protected under current privacy standards and procedures at Stanford Hospital and Clinics, including the use of unique, anonymous identifiers for samples and extensive network security measures.
Genetic research may include looking at information, such as personal appearance and biochemistry, gene sequences, genetic landmarks (DNA markers at known locations in the genome), individual and family medical histories, reactions to medications and responses to treatment. Genetic research raises certain questions about informing you of any results. Possible risks of knowing results include: anxiety; other psychological distress; and the possibility of insurance and job discrimination. Sometimes patients have been required to furnish information from genetic testing for health insurance, life insurance, and/or a job. A Federal law, the Genetic Information Nondiscrimination Act of 2008 (GINA), generally makes it illegal for health insurance companies, group health plans, and employers with 15 or more employees to discriminate against you based on your genetic information.
A possible risk of not knowing includes being unaware of the need for treatment. These risks can change depending on the results of the research and whether there is a treatment or cure for a particular disease.