Literature DB >> 12465649

Genetic privacy and the law: an end to genetics exceptionalism.

L O Gostin1, J G Hodge.   

Abstract

While the proliferation of human genetic information promises to achieve many public benefits, the acquisition, use, retention, and disclosure of genetic data threatens individual liberties. States (and to a lesser degree, the federal government) have responded to the anticipated and actual threats of privacy invasion and discrimination by enacting several types of genetic-specific legislation. These laws emphasize the differences between genetic information and other health information. By articulating these differences, governments afford genetic data an "exceptional" status. The authors argue that genetic exceptionalism is flawed for two reasons: (1) strict protections of autonomy, privacy, and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and (2) there is no clear demarcation separating genetic data from other health data; other health data deserve protections in a national health information infrastructure. The authors present ideas for individual privacy protections that balance the societal need for genetic information and the claims for privacy by individuals and families.

Entities:  

Keywords:  Analytical Approach; Genetics and Reproduction; Legal Approach

Mesh:

Year:  1999        PMID: 12465649

Source DB:  PubMed          Journal:  Jurimetrics        ISSN: 0897-1277


  14 in total

1.  Determining the identifiability of DNA database entries.

Authors:  B Malin; L Sweeney
Journal:  Proc AMIA Symp       Date:  2000

Review 2.  The nature and significance of behavioural genetic information.

Authors:  Ainsley Newson
Journal:  Theor Med Bioeth       Date:  2004

3.  Genetic testing legislation in Western Europe-a fluctuating regulatory target.

Authors:  Sirpa Soini
Journal:  J Community Genet       Date:  2012-01-28

4.  The informed consent aftermath of the genetic revolution. An Italian example of implementation.

Authors:  Federica Artizzu
Journal:  Med Health Care Philos       Date:  2007-07-19

5.  Civilian and military genetics: nondiscrimination policy in a post-GINA world.

Authors:  Susannah Baruch; Kathy Hudson
Journal:  Am J Hum Genet       Date:  2008-10       Impact factor: 11.025

6.  Care of the self and patient participation in genetic discourse: a Foucauldian reading of the surgeon general's "my family health portrait" program.

Authors:  Benjamin R Bates
Journal:  J Genet Couns       Date:  2005-12       Impact factor: 2.537

7.  Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions.

Authors:  Laura Plantinga; Marvin R Natowicz; Nancy E Kass; Sara Chandros Hull; Lawrence O Gostin; Ruth R Faden
Journal:  Am J Med Genet C Semin Med Genet       Date:  2003-05-15       Impact factor: 3.908

8.  Privacy in the Genomic Era.

Authors:  Muhammad Naveed; Erman Ayday; Ellen W Clayton; Jacques Fellay; Carl A Gunter; Jean-Pierre Hubaux; Bradley A Malin; Xiaofeng Wang
Journal:  ACM Comput Surv       Date:  2015-09       Impact factor: 10.282

9.  Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions.

Authors:  Nancy E Kass; Sara Chandros Hull; Marvin R Natowicz; Ruth R Faden; Laura Plantinga; Lawrence O Gostin; Julia Slutsman
Journal:  Am J Med Genet A       Date:  2004-07-30       Impact factor: 2.802

Review 10.  Naked bodies, naked genomes: the special (but not exceptional) nature of genomic information.

Authors:  Daniel P Sulmasy
Journal:  Genet Med       Date:  2014-09-18       Impact factor: 8.822

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