Literature DB >> 7668302

Certificates of confidentiality: a valuable tool for protecting genetic data.

C L Earley1, L C Strong.   

Abstract

Protecting the confidentiality of genetic research data is an important aspect of genetic research that has been discussed in various forums. Research data must be protected to prevent discrimination and its use in litigation. The certificate of confidentiality was created to protect the subjects of alcohol- and drug-abuse studies, who may be engaging in illegal activities. As revised in 1988, the certificate protects investigators engaging in other kinds of studies from being compelled to reveal information about subjects. Because the certificate protects information that could damage a subject's financial or social standing or employability, it is an appropriate tool to use to maintain the confidentiality of genetic data. The Department of Health and Human Services issues the certificates; the procedure for applying for a certificate of confidentiality is presented.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction; Legal Approach

Mesh:

Year:  1995        PMID: 7668302      PMCID: PMC1801267     

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN: 0002-9297            Impact factor:   11.025


  13 in total

1.  Tinkering with destiny: genes and cancer.

Authors:  Shannon Brownlee; Gareth G Cook; Viva Hardigg
Journal:  US News World Rep       Date:  1994-08-22

2.  Participation in pedigree studies and the risk of impeded access to health insurance.

Authors:  Nancy E Kass
Journal:  IRB       Date:  1993 Sep-Oct

3.  Discrimination as a consequence of genetic testing.

Authors:  P R Billings; M A Kohn; M de Cuevas; J Beckwith; J S Alper; M R Natowicz
Journal:  Am J Hum Genet       Date:  1992-03       Impact factor: 11.025

4.  Social and ethical implications of advances in human genetics.

Authors:  R M Cook-Deegan
Journal:  South Med J       Date:  1990-08       Impact factor: 0.954

5.  Genetic counselling, confidentiality, and the medical interests of relatives.

Authors:  R Gillon
Journal:  J Med Ethics       Date:  1988-12       Impact factor: 2.903

6.  Insurance and genetic testing.

Authors:  P S Harper
Journal:  Lancet       Date:  1993-01-23       Impact factor: 79.321

Review 7.  Ethical and legal implications of the new genetics: issues for discussion.

Authors:  D C Wertz
Journal:  Soc Sci Med       Date:  1992-08       Impact factor: 4.634

Review 8.  Ethical aspects of genetic screening.

Authors:  B Modell
Journal:  Ann Med       Date:  1992-12       Impact factor: 4.709

9.  Rights, privacy, and genetic screening.

Authors:  P Reilly
Journal:  Yale J Biol Med       Date:  1991 Jan-Feb

10.  Legal aspects of genetic information.

Authors:  L B Andrews
Journal:  Yale J Biol Med       Date:  1991 Jan-Feb
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  12 in total

1.  Certificates of Confidentiality: Protecting Human Subject Research Data in Law and Practice.

Authors:  Leslie E Wolf; Mayank J Patel; Brett A Williams Tarver; Jeffrey L Austin; Lauren A Dame; Laura M Beskow
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

Review 2.  The routinisation of genomics and genetics: implications for ethical practices.

Authors:  M W Foster; C D M Royal; R R Sharp
Journal:  J Med Ethics       Date:  2006-11       Impact factor: 2.903

3.  ASHG report. Statement on informed consent for genetic research. The American Society of Human Genetics.

Authors: 
Journal:  Am J Hum Genet       Date:  1996-08       Impact factor: 11.025

Review 4.  Insurance underwriting in the genetic era.

Authors:  R J Pokorski
Journal:  Am J Hum Genet       Date:  1997-01       Impact factor: 11.025

5.  The Familial Cancer Program of the Vermont Cancer Center: Development of a Cancer Genetics Program in a Rural Area.

Authors:  W C McKinnon; A E Guttmacher; M S Greenblatt; B E Compas; S May; R E Cutler; D W Yandell
Journal:  J Genet Couns       Date:  1997-06       Impact factor: 2.537

6.  Certificates of confidentiality.

Authors:  J A Lowden
Journal:  Am J Hum Genet       Date:  1996-02       Impact factor: 11.025

7.  Screening for 185delAG in the Ashkenazim.

Authors:  C S Richards; P A Ward; B B Roa; L C Friedman; A A Boyd; G Kuenzli; J K Dunn; S E Plon
Journal:  Am J Hum Genet       Date:  1997-05       Impact factor: 11.025

Review 8.  Ethical and methodological issues in pedigree stroke research.

Authors:  B B Worrall; D T Chen; J F Meschia
Journal:  Stroke       Date:  2001-06       Impact factor: 7.914

9.  Personal characteristics of older primary care patients who provide a buccal swab for apolipoprotein E testing and banking of genetic material: the spectrum study.

Authors:  Hillary R Bogner; Marsha N Wittink; Jon F Merz; Joseph B Straton; Peter F Cronholm; Peter V Rabins; Joseph J Gallo
Journal:  Community Genet       Date:  2004

10.  The moral and legal need to disclose despite a certificate of confidentiality.

Authors:  Erin Talati Paquette; Lainie Friedman Ross
Journal:  Am J Bioeth       Date:  2014       Impact factor: 11.229

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