“…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.…”
ObjectiveThe completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients’ medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point. In order to answer these questions fully, this paper addresses the ethical, logistical and technological issues involved in incorporating these data into EHRs.Materials and methodsThis paper reviews journal articles, government documents and websites relevant to the ethics, genetics and informatics domains as they pertain to EHRs.Results and discussionThe authors explore concerns and tasks facing health information technology (HIT) developers at the intersection of ethics, genetics, and technology as applied to EHR development.ConclusionsBy ensuring the efficient and effective incorporation of genetic data into EHRs, HIT developers will play a key role in facilitating the delivery of personalized medicine.
“…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.…”
ObjectiveThe completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients’ medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point. In order to answer these questions fully, this paper addresses the ethical, logistical and technological issues involved in incorporating these data into EHRs.Materials and methodsThis paper reviews journal articles, government documents and websites relevant to the ethics, genetics and informatics domains as they pertain to EHRs.Results and discussionThe authors explore concerns and tasks facing health information technology (HIT) developers at the intersection of ethics, genetics, and technology as applied to EHR development.ConclusionsBy ensuring the efficient and effective incorporation of genetic data into EHRs, HIT developers will play a key role in facilitating the delivery of personalized medicine.
“…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).…”
There are now several well-documented psychological problems associated with prenatal testing programmes. These include poor understanding of tests undergone or declined, anxiety following false positive results, and false reassurance in those receiving negative test results. There is, as yet, little evidence concerning how to provide services to circumvent these. The focus of this review is upon just one of these problems: how best to inform women about prenatal testing and their reproductive options following the diagnosis of a fetal abnormality. Possible methods of improving informed decision-making either about whether to undergo testing or whether to terminate an affected pregnancy are described drawing upon research from antenatal and other health care areas. Future challenges for clinical practice and research in this area concern the range of conditions and predispositions for which prenatal testing with the option of termination should be offered.
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