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A comparative study of mental health law
Published in Takenori Mishiba, Workplace Mental Health Law, 2020
Another piece of legislation prohibiting mental health related discrimination besides the ADA is the Genetic Information Nondiscrimination Act (GINA) of 2008. Enacted in 2008, GINA prohibits an employer from obtaining a job applicant or employee’s genetic information, in principle, and it prohibits discrimination based on genetic information in all aspects of employment.
Human Control of Life
Published in Robert M. Veatch, Laura K. Guidry-Grimes, The Basics of Bioethics, 2019
Robert M. Veatch, Laura K. Guidry-Grimes
Because of how it reveals predispositions for certain health conditions and other desirable or undesirable traits, plus its implications for other (past, current, and future) family members, genetic information is highly sensitive. As genetic information is increasingly collected and understood, it becomes more important to have regulations on the distribution and use of that information so as to prevent genetic discrimination. In the United States, the Genetic Information Nondiscrimination Act of 2008 (GINA) is meant to protect individuals regarding health insurance coverage and employment. Insurers may not use genetic information to determine eligibility, coverage, underwriting, or premiums. Employers and labor organizations are legally prohibited from requesting, requiring, or purchasing genetic information, which includes genetic tests and family medical information.8 The law would forbid, for example, firing or refusing to promote an employee because she has mental illness in her family. It would also disallow an employer’s requesting genetic testing as part of making decisions about benefits.
Ethics in the Era of Precision Medicine
Published in Lawrence S. Chan, William C. Tang, Engineering-Medicine, 2019
Other regulatory activities by the government include privacy protections and protections against genetic discrimination. As noted above the concern of genetic discrimination would be the misuse of personal genetic information resulting in prejudicial treatment of the individual on the basis of their genetic risk factors. Such misuse could be envisioned in the work sector by prospective employers or in the realm of health or other insurance coverage. The Genetic Information Nondiscrimination Act (GINA) of 2008 was intended to protect individuals from such discrimination, but was limited to a prohibition of such discrimination by employers and health insurers (Abrahams and Silver 2011, Vogenberg et al. 2010b, Bolouri 2010). GINA does not comprehensively prevent potential discrimination from other forms of insurance, and recent attention has been given to long-term insurance and other insurance products that may be exempt from the protections of GINA. Similarly, changes in healthcare regulation have opened the door to the possible use of behavioral incentives (offered in the form of rebates or discounts) to existing insurance customers for their participation in genetic testing or screening activities. While such practices would not directly threaten potential coverage, pricing models for insurance could increasingly incorporate financial disincentives to those who do not wish to participate in such activities regardless of justification.
Privacy and the Genetic Community
Published in The American Journal of Bioethics, 2022
Marisa A. Leib-Neri, Anya E. R. Prince
At the federal level, the U.S. currently regulates genetic privacy by protecting certain sensitive information in certain sectors. Notably, the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule prohibits disclosure of personal health information, which includes identifiable genetic information, by covered entities, such as health care providers, hospitals, and insurance companies. In employment and health insurance, GINA prohibits covered entities from collecting genetic information or using such information to discriminate. Outside of HIPAA and GINA, the general U.S. privacy regime is built on a foundation of individual notice and consent. That is, consumers are provided information in user agreements about what personal data a company may collect and how companies may share this data. By continuing to use the product and engage in the activity, the individual is consenting to the collection and future sharing of their data. The notice and consent framework is ostensibly meant to give individuals control over what data they allow others to gain access to and share.
Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Published in The American Journal of Bioethics, 2021
Charles Dupras, Eline M. Bunnik
These properties of DNA are seen as increasing both the risk of patient or research participant (re)identification and the level of sensitivity of the information potentially conveyed (Hellman 2003). Indeed, it is sometimes seen as unreasonable to believe that genomic data can be completely and permanently anonymized, because an individual’s genome, and even relatively small combinations of genetic variants, are so unique, that they should always be considered – although sometimes only indirectly – potentially identifying (Shabani and Marelli 2019). In the European Union (EU), for instance, de-identified and pseudonymized genomic data may be considered ‘sensitive personal data’ under the General Data Protection Regulation (GDPR), therefore impacting genetic data collection and governance requirements (Mitchell et al. 2020). In contrast, this is currently not the case in the United States, where only directly identifying personal data (excluding genomic data) are conceived as deserving special privacy protections (NHGRI, 2017). However, this is not to say that no other regulation in this country grants a particular legal status to the genome. This is actually the case of the Genetic Information Nondiscrimination Act (GINA). GINA was enacted in 2008 to prevent the adverse differential treatment of individuals in insurance of employment when based on genomic information. Many other jurisdictions of the world, too, have laws or regulations in place focusing specifically on the protection of genomic data (Joly, Dalpé, Dupras, et al. 2020; Joly, Dalpé, Pinkesz, et al. 2020).
A genetic variation in CHI3L1 is associated with bronchial asthma
Published in Archives of Physiology and Biochemistry, 2021
Jinlian Shao, Xuexi Yang, Dunqiang Ren, Yaling Luo, Wenyan Lai
Two hundred and sixty patients with bronchial asthma were recruited from October 2008 to June 2011, and their symptoms including cough, wheezing and shortness of breath, were evaluated. Patients were diagnosed by a respiratory expert at the Nanfang Hospital in Guangzhou city according to the criteria of the Genetic Information Nondiscrimination Act of 2008. An extended medical history was recorded, including the occurrence and duration of wheezing symptoms, previous and acute medications, severity of previous asthma attacks, previous allergic rhinitis or conjunctivitis, atopic dermatitis, and any family history of allergic diseases. Patients were considered to have atopy if they had a positive skin-prick test (SPT) for at least 1 of 14 airborne allergens (Ober et al. 2000). Exclusion criteria were episodic asthma, concomitant chronic respiratory disease (COPD, interstitial disease, etc.), cancer diagnosed or treated within the previous 5 years, current immunosuppression or immunodeficiency, and hepatic or renal insufficiency. Pregnant women also were not eligible for the study.