Literature DB >> 31666963

The law of genetic privacy: applications, implications, and limitations.

Ellen Wright Clayton1, Barbara J Evans2, James W Hazel3, Mark A Rothstein4.   

Abstract

Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.
© The Author(s) 2019. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School.

Entities:  

Keywords:  DNA; GINA; HIPAA; genetics; genomics; privacy

Year:  2019        PMID: 31666963      PMCID: PMC6813935          DOI: 10.1093/jlb/lsz007

Source DB:  PubMed          Journal:  J Law Biosci        ISSN: 2053-9711


  23 in total

1.  Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.

Authors:  Susan M Wolf; Pilar N Ossorio; Susan A Berry; Henry T Greely; Amy L McGuire; Michelle A Penny; Sharon F Terry
Journal:  J Law Med Ethics       Date:  2020-03       Impact factor: 1.718

2.  The Implementation Chasm Hindering Genome-informed Health Care.

Authors:  Kevin B Johnson; Ellen Wright Clayton; Justin Starren; Josh Peterson
Journal:  J Law Med Ethics       Date:  2020-03       Impact factor: 1.718

3.  Ten reasons why immunity passports are a bad idea.

Authors:  Natalie Kofler; Françoise Baylis
Journal:  Nature       Date:  2020-05       Impact factor: 49.962

Review 4.  Advancing Artificial Intelligence in Health Settings Outside the Hospital and Clinic.

Authors:  Nakul Aggarwal; Mahnoor Ahmed; Sanjay Basu; John J Curtin; Barbara J Evans; Michael E Matheny; Shantanu Nundy; Mark P Sendak; Carmel Shachar; Rashmee U Shah; Sonoo Thadaney-Israni
Journal:  NAM Perspect       Date:  2020-11-30

5.  Comparing the attitudes of physicians and non-physicians toward communicating a patient's BRCA1 mutation to a first-degree relative against a patient's wishes.

Authors:  Jane E Zebrack; Wei Yang; Matthew Milone; Max J Coppes
Journal:  J Community Genet       Date:  2022-05-21

6.  Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records.

Authors:  Shibani Kanungo; Jayne Barr; Parker Crutchfield; Casey Fealko; Neelkamal Soares
Journal:  Appl Clin Inform       Date:  2020-11-11       Impact factor: 2.342

Review 7.  Precision health in Taiwan: A data-driven diagnostic platform for the future of disease prevention.

Authors:  Wesley Wei-Wen Hsiao; Jui-Chu Lin; Chien-Te Fan; Saint Shiou-Sheng Chen
Journal:  Comput Struct Biotechnol J       Date:  2022-03-26       Impact factor: 6.155

8.  Health Policy and Privacy Challenges Associated With Digital Technology.

Authors:  David Grande; Xochitl Luna Marti; Rachel Feuerstein-Simon; Raina M Merchant; David A Asch; Ashley Lewson; Carolyn C Cannuscio
Journal:  JAMA Netw Open       Date:  2020-07-01

9.  'A sword of Damocles': patient and caregiver beliefs, attitudes and perspectives on presymptomatic testing for autosomal dominant polycystic kidney disease: a focus group study.

Authors:  Charlotte Logeman; Yeoungjee Cho; Benedicte Sautenet; Gopala K Rangan; Talia Gutman; Jonathan Craig; Albert Ong; Arlene Chapman; Curie Ahn; Helen Coolican; Juliana Tze-Wah Kao; Ron T Gansevoort; Ronald Perrone; Tess Harris; Vincent Torres; Kevin Fowler; York Pei; Peter Kerr; Jessica Ryan; David Johnson; Andrea Viecelli; Clair Geneste; Hyunsuk Kim; Yaerim Kim; Martin Howell; Angela Ju; Karine E Manera; Armando Teixeira-Pinto; Gayathri Parasivam; Allison Tong
Journal:  BMJ Open       Date:  2020-10-10       Impact factor: 2.692

10.  Attacks on genetic privacy via uploads to genealogical databases.

Authors:  Michael D Edge; Graham Coop
Journal:  Elife       Date:  2020-01-07       Impact factor: 8.713

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.