Literature DB >> 33769904

"He's under oath": Privacy and Confidentiality Views Among People Who Inject Drugs Enrolled in a Study of Social Networks and Human Immunodeficiency Virus/Hepatitis C Virus Risk.

Roberto Abadie1, Celia Fisher2, Kirk Dombrowski3.   

Abstract

Despite the promise of social network research, this method raises important ethical questions regarding privacy and confidentiality. Although researchers and bioethicists have considered research obligations in relation to marginal or vulnerable populations, the views of people who inject drugs (PWIDs) have not been sufficiently considered. To elicit participants' views of research obligations, we conducted in-depth interviews with a subset (n = 40) of active PWIDs enrolled in a large social network study. Findings suggest participants have an expectation of confidentiality but believe this obligation need not be absolute and can be waived if a participant violates community norms or place others at risk. Ethics boards should recognize that marginalized populations are able to articulate complex moral views about privacy and confidentiality. Engaging participants in dialogue about the responsible conduct of research presents an opportunity to correct under- or overestimations of research vulnerabilities when such decisions are restricted to the perspectives of investigators or Institutional Review Board members.

Entities:  

Keywords:  Puerto Rico; anonymity; community-based research; confidentiality; ethics; people who inject drugs; privacy; social networks

Year:  2021        PMID: 33769904      PMCID: PMC8260099          DOI: 10.1177/15562646211004411

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


  11 in total

1.  Addiction research ethics and the Belmont principles: do drug users have a different moral voice?

Authors:  Celia B Fisher
Journal:  Subst Use Misuse       Date:  2010-11-15       Impact factor: 2.164

2.  Research participation as work: comparing the perspectives of researchers and economically marginalized populations.

Authors:  Peter Davidson; Kimberly Page
Journal:  Am J Public Health       Date:  2012-05-17       Impact factor: 9.308

3.  "Doing Trust".

Authors:  Marilys Guillemin; Lynn Gillam; Emma Barnard; Paul Stewart; Hannah Walker; Doreen Rosenthal
Journal:  J Empir Res Hum Res Ethics       Date:  2016-09-18       Impact factor: 1.742

4.  Social capital and obesity among adults: Longitudinal findings from the Montreal neighborhood networks and healthy aging panel.

Authors:  Yun-Hsuan Wu; Spencer Moore; Laurette Dube
Journal:  Prev Med       Date:  2017-11-29       Impact factor: 4.018

5.  "Money Helps": People who inject drugs and their perceptions of financial compensation and its ethical implications.

Authors:  Roberto Abadie; Brandon Brown; Celia B Fisher
Journal:  Ethics Behav       Date:  2018-11-05

6.  Community health workers: a bridge to healthcare for people who inject drugs.

Authors:  Kirsty Morgan; Jessica Lee; Bernadette Sebar
Journal:  Int J Drug Policy       Date:  2014-11-13

7.  Ethical use of social media to facilitate qualitative research.

Authors:  Belinda Lunnay; Joseph Borlagdan; Darlene McNaughton; Paul Ward
Journal:  Qual Health Res       Date:  2014-09-11

8.  "They got their program, and I got mine": a cautionary tale concerning the ethical implications of using respondent-driven sampling to study injection drug users.

Authors:  Greg Scott
Journal:  Int J Drug Policy       Date:  2008-01-15

9.  Generating trust: Programmatic strategies to reach women who inject drugs with harm reduction services in Dar es Salaam, Tanzania.

Authors:  Sophia Zamudio-Haas; Bathsheba Mahenge; Haneefa Saleem; Jessie Mbwambo; Barrot H Lambdin
Journal:  Int J Drug Policy       Date:  2016-01-23

10.  Social Determinants of HIV/HCV Co-Infection: A case Study from People Who Inject Drugs in Rural Puerto Rico.

Authors:  Roberto Abadie; Melissa Welch-Lazoritz; Khan Bilal; Kirk Dombrowski
Journal:  Addict Behav Rep       Date:  2017-01-30
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