Purpose: To explain the Genetic Information Nondiscrimination Act (GINA), what it covers, and what it does not cover to aid primary care practitioners in advising their patients.
Data Sources: Governmental agencies, congressional records, and various nongovernmental agencies, press releases, and journal articles.
Conclusions: The GINA will protect patients from employment and insurance information in multiple ways. However, loopholes exist which will need to be addressed at the next review of the Act in 6 years.
Implications For Practice: In order to provide accurate information regarding genetic testing, clinicians need to be familiar with key factors about GINA regarding law, practice, impact on patients and their rights in terms of genetic testing.
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http://dx.doi.org/10.1111/j.1745-7599.2010.00504.x | DOI Listing |
Front Public Health
January 2025
Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, Australia.
Introduction: The field of genomics is rapidly evolving and has made significant impact on the diagnosis and understanding of rare and genetic diseases, in guiding precision medicine in cancer treatment, and in providing personalized risk assessment for disease development and treatment responses. However, according to the literature, there is widespread socio economic and racial inequities in the diagnosis, treatment, and in the use of genomic medicine services. This policy review sets out to explore the concept of equity in access to genomic care, the level of inclusion of equity and how it is addressed and what mechanisms are in place to achieve equity in genomic care in the international health policy.
View Article and Find Full Text PDFPublic Health Genomics
December 2024
Genomics Health Services Research Program, St. Michael's Hospital, Unity Health Toronto, Toronto, Ontario, Canada.
Introduction: Hereditary cancer syndromes (HCS), such as hereditary breast and ovarian cancer syndrome (HBOC) and Lynch syndrome (LS), represent approximately 10% of all cancers. Along with medical burdens associated with the genetic risk of developing cancer, many individuals face stigma and discrimination. Genetic discrimination refers to negative treatment, unfair profiling, or harm based on genetic characteristics, manifesting as "felt" stigma (ostracization without discriminatory acts) or "enacted" stigma (experiencing discriminatory acts).
View Article and Find Full Text PDFHealth Res Policy Syst
October 2024
Division of Human Genetics, University of Cape Town, Cape Town, South Africa.
JAMA Netw Open
September 2024
Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Importance: Governments worldwide have become increasingly cognizant of the spread of genetic discrimination (negative treatment or harm on the basis of actual or presumed genetic characteristics). Despite efforts by a number of governments to establish regulations addressing this phenomenon, public concern about genetic discrimination persists.
Objective: To identify key elements of an optimal genetic nondiscrimination policy and inform policymakers as they seek to allay genetic nondiscrimination and related public anxieties.
The year 2023 marked the 60 anniversary of screening newborns in the United States for diseases that benefit from early identification and intervention. All around the world, the goal of NBS is to facilitate timely diagnosis and management to improve individual health outcomes in all newborns regardless of their place of birth, economic circumstances, ability to pay for treatment, and access to healthcare. Advances in technology to screen and treat disease have led to a rapid increase in the number of screened conditions, and innovations in genomics are expected to exponentially expand this number further.
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