Genetic Privacy

被引:0
作者
Ajunwa, Ifeoma [1 ]
Briscoe, Forrest [2 ]
机构
[1] Emory Sch Law, Law, Atlanta, GA 30322 USA
[2] Cornell Univ, ILR Sch, Ithaca, NY USA
关键词
CONFIDENTIALITY; DISCRIMINATION;
D O I
暂无
中图分类号
D9 [法律]; DF [法律];
学科分类号
0301 ;
摘要
The last decade has brought many technological advances to genetic testing. Increasingly, genetic testing, which was previously reserved for clinical or medical settings, has made its way to other spaces. Most significantly, we are now seeing the re-introduction of genetic testing to the workplace. Although the Genetic Information genetic testing in the workplace, genetic testing, as part of workplace wellness programs, is lawful under the aegis of the Affordable Care Act (ACA). This poses a threat to genetic privacy in the workplace. While some, like the actor Angelina Jolie, who credits genetic testing with her choice to undergo a double mastectomy and oophorectomy after discovering she carried the BRCA mutated gene, and Chris Hemsworth, who stepped away from acting after genetic testing revealed his genetic propensity for Alzheimer's disease, see genetic testing as affording agency, others see any type of genetic testing as raising the specter of eugenics and genetic discrimination. Genetic data, which is unique, personal, and yet communal, stretches the limits of existing legal protections for workers' privacy. This Article offers an analysis of the legal history and challenges associated with genetic testing, especially in the workplace. The Article provides an overview of the limited state-bystate protections afforded to subjects of genetic testing as well as the scant national regulation of genetic testing companies. The Article then sets forth five legal policy recommendations for regulating genetic privacy in the workplace, such as (1) Opportunity Commission (EEOC) for when genetic discrimination could give rise to genetic testing under workplace wellness programs is "murky" and should be treated as limited consent; (4) expanding FDA oversight over genetic testing; and (5) the promulgation of more stringent rules for the protection of genetic data.
引用
收藏
页数:39
相关论文
共 50 条
[31]   Ethics and patient privacy [J].
McCarthy, Robert L. .
JOURNAL OF THE AMERICAN PHARMACISTS ASSOCIATION, 2008, 48 (06) :E144-E152
[32]   Privacy Integrated Queries An Extensible Platform for Privacy-Preserving Data Analysis [J].
McSherry, Frank .
ACM SIGMOD/PODS 2009 CONFERENCE, 2009, :19-30
[33]   The Online Privacy Divide: Testing Resource and Identity Explanations for Racial/Ethnic Differences in Privacy Concerns and Privacy Management Behaviors on Social Media [J].
Wang, Laurent H. ;
Metzger, Miriam J. .
COMMUNICATION RESEARCH, 2024,
[34]   Privacy enhancing techniques - The key to secure communication and management of clinical and genomic data [J].
De Moor, GJE ;
Claerhout, B ;
De Meyer, F .
METHODS OF INFORMATION IN MEDICINE, 2003, 42 (02) :148-153
[35]   Privacy protection for clinical and genomic data - The use of privacy-enhancing techniques in medicine [J].
Claerhout, B ;
DeMoor, GJE .
INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS, 2005, 74 (2-4) :257-265
[36]   Information privacy and correlates: an empirical attempt to bridge and distinguish privacy-related concepts [J].
Dinev, Tamara ;
Xu, Heng ;
Smith, Jeff H. ;
Hart, Paul .
EUROPEAN JOURNAL OF INFORMATION SYSTEMS, 2013, 22 (03) :295-316
[37]   FISCAL CITIZENSHIP AND TAXPAYER PRIVACY [J].
Zhang, Alex .
COLUMBIA LAW REVIEW, 2025, 125 (01) :235-318
[38]   PRIVACY AND MARKETS: A LOVE STORY [J].
Calo, Ryan .
NOTRE DAME LAW REVIEW, 2015, 91 (02) :649-690
[39]   CONFIDENTIALITY AND PRIVACY IN ALBANIAN HEALTHCARE [J].
Meksi, Andia ;
Shkurti, Enkelejda ;
Cipi, Bardhyl .
INTERNATIONAL JOURNAL OF ECOSYSTEMS AND ECOLOGY SCIENCE-IJEES, 2021, 11 (04) :911-918
[40]   Respecting privacy in care services [J].
Bates, Peter ;
McLoughlin, Brendan .
JOURNAL OF ADULT PROTECTION, 2019, 21 (06) :276-284