Literature DB >> 25325810

Protecting posted genes: social networking and the limits of GINA.

Sandra Soo-Jin Lee1, Emily Borgelt.   

Abstract

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its impact on the workplace. In the Web 2.0 era, employers in most states can legally search about job candidates and employees online, probing social networking sites for personal information that might bear on hiring and employment decisions. We examine GINA's protections for online sharing of genetic information as well as its limitations, and propose policy recommendations to address current gaps that leave employees' genetic information vulnerable in a Web-based world.

Keywords:  GINA; direct-to-consumer genetic testing; genetic testing; personal genomics; social media; social networking

Mesh:

Year:  2014        PMID: 25325810     DOI: 10.1080/15265161.2014.957417

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN: 1526-5161            Impact factor:   11.229


  6 in total

Review 1.  Privacy challenges and research opportunities for genomic data sharing.

Authors:  Luca Bonomi; Yingxiang Huang; Lucila Ohno-Machado
Journal:  Nat Genet       Date:  2020-06-29       Impact factor: 38.330

2.  Policy and the inevitability of sharing: GINA and social media.

Authors:  Joon-Ho Yu; Rebecca S Engrav
Journal:  Am J Bioeth       Date:  2014       Impact factor: 11.229

3.  A content analysis of direct-to-consumer DNA testing on TikTok.

Authors:  Corey H Basch; Joseph Fera; Nasia Quinones
Journal:  J Community Genet       Date:  2021-04-15

4.  Direct-to-consumer genetic testing in the news: a descriptive analysis.

Authors:  Corey H Basch; Grace C Hillyer; Lalitha Samuel; Erela Datuowei; Betty Cohn
Journal:  J Community Genet       Date:  2022-10-14

Review 5.  Confidentiality & the Risk of Genetic Discrimination: What Surgeons Need to Know.

Authors:  Amanda Gammon; Deborah W Neklason
Journal:  Surg Oncol Clin N Am       Date:  2015-07-16       Impact factor: 3.495

6.  Regulating Gamete Donation in the U.S.: Ethical, Legal and Social Implications.

Authors:  Maya Sabatello
Journal:  Laws       Date:  2015-09
  6 in total

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