Literature DB >> 19736694

Can you keep a (genetic) secret? The genetic privacy movement.

Margaret Everett1.   

Abstract

This paper reviews the literature on genetic privacy, especially since 1995 and the first proposal for national genetic privacy legislation. Since that time, a majority of states have passed some form of genetic privacy legislation, and efforts to pass federal legislation are ongoing. Such new laws, however, remain untested in the courts and their effects are unclear. If they fail to provide additional protections against discrimination for most people, their most significant impact may be in their ability to either diminish or enhance the power of genetic information and to influence the way individuals view themselves and others. How does "genetic exceptionalism"--the idea that genetic information is different from other types of medical information--relate to "genetic essentialism"--the idea that we are to a large extent shaped by our genes? Anthropological views on genetics and personhood bring a new perspective to this ongoing debate. Implications for counseling practices are also explored.

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Year:  2004        PMID: 19736694     DOI: 10.1023/b:jogc.0000035522.58496.c8

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  20 in total

1.  Genetic privacy and discrimination: a survey of state legislation. Comment.

Authors:  W F Mulholland; A S Jaeger
Journal:  Jurimetrics       Date:  1999

2.  DNA blueprints, personhood, and genetic privacy.

Authors:  H Miller
Journal:  Health Matrix Clevel       Date:  1998

3.  "Genetic exceptionalism" in medicine: clarifying the differences between genetic and nongenetic tests.

Authors:  Michael J Green; Jeffrey R Botkin
Journal:  Ann Intern Med       Date:  2003-04-01       Impact factor: 25.391

4.  The genetic revolution at work: legislative efforts to protect employees.

Authors:  Patricia A Roche
Journal:  Am J Law Med       Date:  2002

5.  Genetics and privacy.

Authors:  Joanne L Hustead; Janlori Goldman
Journal:  Am J Law Med       Date:  2002

Review 6.  Conferring a federal property right in genetic material: stepping into the future with the Genetic Privacy Act.

Authors:  M M Lin
Journal:  Am J Law Med       Date:  1996

7.  The impact of the Genetic Privacy Act on medicine.

Authors:  P R Reilly
Journal:  J Law Med Ethics       Date:  1995       Impact factor: 1.718

8.  Why the use of anonymous samples for research matters.

Authors:  E W Clayton
Journal:  J Law Med Ethics       Date:  1995       Impact factor: 1.718

9.  Legislating privacy: the HIV experience.

Authors:  W E Parmet
Journal:  J Law Med Ethics       Date:  1995       Impact factor: 1.718

10.  The social life of genes: privacy, property and the new genetics.

Authors:  Margaret Everett
Journal:  Soc Sci Med       Date:  2003-01       Impact factor: 4.634

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  4 in total

1.  Biobank governance: heterogeneous modes of ordering and democratization.

Authors:  Herbert Gottweis; Georg Lauss
Journal:  J Community Genet       Date:  2011-12-07

2.  Prenatal whole genome sequencing: just because we can, should we?

Authors:  Greer Donley; Sara Chandros Hull; Benjamin E Berkman
Journal:  Hastings Cent Rep       Date:  2012-06-20       Impact factor: 2.683

3.  Generating a taxonomy of regulatory responses to emerging issues in biomedicine.

Authors:  Wendy Lipworth
Journal:  J Bioeth Inq       Date:  2005       Impact factor: 1.352

4.  Genetic 'risk carriers' and lifestyle 'risk takers'. Which risks deserve our legal protection in insurance?

Authors:  Ine Van Hoyweghen; Klasien Horstman; Rita Schepers
Journal:  Health Care Anal       Date:  2007-02-21
  4 in total

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