Genetic Diagnosis and Treatment

Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations

“…Discrimination in access to insurance and employment opportunities related to genetic testing has been discussed in many articles. 47–50 52

Legislative acts relevant to genetic testing Health Information Portability and Accountability Act of 1996 (HIPAA) 73 Sets standards on how protected health information should be controlled Does not apply to many companies or laboratories that perform direct to consumer genetic testing and analysis Protects against genetic discrimination in employer-sponsored group health plans Genetic Information Nondiscrimination Act of 2008 (GINA) 74 Extends HIPAA protections by making it illegal to use genetic information to underwrite group and individual health insurance Prohibits employers from making employment decisions based on genetic information Does not address life insurance, disability insurance or long-term care insurance discrimination Does not apply to health benefits for federal employees, members of the military, veterans seeking healthcare through the Department of Veterans Affairs, or the Indian Health Service Does not apply to athletic programs Patient Protection and Affordable Care Act of 2010 (ACA) 75 Prohibits health insurers from determining eligibility for coverage based on signs and symptoms of genetic disease Changes in 2014: prohibits differences in premiums according to health status and genetic information

These US laws were enacted to minimize the risk of employment and health insurance discrimination due to genetic findings. However, discrimination in eligibility for disability, life or long-term care insurance is still not formally addressed by federal statutes.…”

Towards informed decisions about prenatal testing: A review

“…The consequences of conducting screening in this way require study. Fost (1993) argues that there is sufficient evidence from introducing neonatal tests performed without parents' knowledge to suggest that failing to inform parents about all the tests they are about to undergo is fraught with problems. Once a problem has been detected, however minor, parents can have great difficulty in continuing with the pregnancy (Rothman, 1986).…”

Voluntary Disclosure of BRCA1 Mutation Test Results

“…G ENETIC TESTS FOR INHERITED CONDITIONS raise complex questions regarding the communication of test results to third parties such as family members, employers, and insurers. There are active debates over the patient's and the physician's "duty to warn" family members of genetic risk (Wertz and Fletcher, 1989;Fost, 1993; The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, 1998), and over appropriate public policy concerning "genetic discrimination" in employment and insurance (Federal Register, 1999;White, 1999;"Enacted State . .…”