Literature DB >> 23086043

Certificates of confidentiality: legal counsels' experiences with and perspectives on legal demands for research data.

Leslie E Wolf1, Lauren A Dame, Mayank J Patel, Brett A Williams, Jefferey A Austin, Laura M Beskow.   

Abstract

The certificate of confidentiality (Certificate) is an important tool for protecting identifiable, sensitive human subjects research data in the United States. However, little is known about the Certificate's effectiveness in protecting identifiable data. We interviewed 24 legal counsel representing U.S. research institutions about their experiences with legal demands for research data. Our respondents reported few, if any, legal demands over the course of their tenure, but two-thirds had experience with legal demands for data protected by a Certificate. They reported such demands often were resolved without disclosure of identifiable research data, typically without court intervention. While our respondents reported similar success protecting identifiable data in court, they often did not rely on the Certificate to do so.

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Year:  2012        PMID: 23086043      PMCID: PMC3640418          DOI: 10.1525/jer.2012.7.4.1

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  2 in total

1.  Research ethics. Certificates of confidentiality and compelled disclosure of data.

Authors:  Laura M Beskow; Lauren Dame; E Jane Costello
Journal:  Science       Date:  2008-11-14       Impact factor: 47.728

2.  Institutional review boards' use and understanding of certificates of confidentiality.

Authors:  Laura M Beskow; Devon K Check; Emily E Namey; Lauren A Dame; Li Lin; Alexandra Cooper; Kevin P Weinfurt; Leslie E Wolf
Journal:  PLoS One       Date:  2012-09-04       Impact factor: 3.240

  2 in total
  10 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

2.  Research Participants' Understanding of and Reactions to Certificates of Confidentiality.

Authors:  Laura M Beskow; Devon K Check; Natalie Ammarell
Journal:  AJOB Prim Res       Date:  2014-01-01

3.  Biobanking, consent, and certificates of confidentiality: does the ANPRM muddy the water?

Authors:  Brett A Williams; Leslie E Wolf
Journal:  J Law Med Ethics       Date:  2013       Impact factor: 1.718

4.  Addressing Ethical Challenges in US-Based HIV Phylogenetic Research.

Authors:  Liza Dawson; Nanette Benbow; Faith E Fletcher; Seble Kassaye; Amy Killelea; Stephen R Latham; Lisa M Lee; Thomas Leitner; Susan J Little; Sanjay R Mehta; Omar Martinez; Brian Minalga; Art Poon; Stuart Rennie; Jeremy Sugarman; Patricia Sweeney; Lucia V Torian; Joel O Wertheim
Journal:  J Infect Dis       Date:  2020-11-13       Impact factor: 5.226

5.  Informed consent for HIV phylogenetic research: A case study of urban individuals living with HIV approached for enrollment in an HIV study.

Authors:  Abby E Rudolph; Omar Martinez; Robin Davison; Chineye Brenda Amuchi
Journal:  EHQUIDAD       Date:  2020 Jul-Dec

6.  Planning for Long-Term Follow-Up: Strategies Learned from Longitudinal Studies.

Authors:  Karl G Hill; Danielle Woodward; Tiffany Woelfel; J David Hawkins; Sara Green
Journal:  Prev Sci       Date:  2016-10

7.  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

8.  Certificates of confidentiality and informed consent: perspectives of IRB chairs and institutional legal counsel.

Authors:  Devon K Check; Leslie E Wolf; Lauren A Dame; Laura M Beskow
Journal:  IRB       Date:  2014 Jan-Feb

9.  Microsatellite Markers in Biobanking: A New Multiplexed Assay.

Authors:  Gretchen Smith; Debra Mathews; Samuel Sander-Effron; Deborah Requesens; Nahid Turan; Laura Scheinfeldt
Journal:  Biopreserv Biobank       Date:  2021-09-01       Impact factor: 2.300

10.  Protecting Participants in Genomic Research: Understanding the "Web of Protections" Afforded by Federal and State Law.

Authors:  Leslie E Wolf; Catherine M Hammack; Erin Fuse Brown; Kathleen M Brelsford; Laura M Beskow
Journal:  J Law Med Ethics       Date:  2020-03       Impact factor: 1.604

  10 in total

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