Personal and community benefits and harms of research

Views from Rakai, Uganda

Carrie Thiessen, Robert Ssekubugu, Jennifer Wagman, Mohammed Kiddugavu, Maria J Wawer, Ezekiel Emanuel, Ronald H Gray, David Serwadda, Christine Grady

Research output: Contribution to journalArticle

Abstract

OBJECTIVES: To assess what individuals in low-income countries perceive as benefits and harms of population-based HIV/STD research. DESIGN: A total of 811 research participants, research decliners, and community opinion leaders in the Rakai District, Uganda were surveyed. Types of personal and community benefits and harms, as well as rates of reporting great personal and community benefit were assessed. METHODS: Using logistic regression, demographic characteristics, participant and opinion leader status, use of Rakai Health Sciences Program (RHSP) services, and perceived research effects were entered as predictors of reported great personal and great community benefit. RESULTS: Most respondents thought that RHSP research was of great personal (85%) and community (88%) benefit. The perception that the RHSP was a great personal benefit was correlated with female sex, post-secondary education, frequent use of RHSP-sponsored medical services, health knowledge gains, and increased hope for future health improvements. Persons of non-Baganda ethnicity and 30-39 year-olds were less likely to believe research was personally beneficial. Regarding research as a great community benefit was associated with reported health knowledge gains, greater hope for Rakai residents' future health, and local economic benefit. Decliners were the most likely to report a personal harm, while community opinion leaders identified community harms at the highest rates. CONCLUSIONS: The majority of Rakai residents report that HIV/STD research has enhanced their own and their communities' welfare. Different factors were associated with the belief that research is a personal versus community benefit. Variations in participant, decliner, and community opinion leader perceptions highlight inadequacies of current community consultation mechanisms.

Original languageEnglish (US)
Pages (from-to)2493-2501
Number of pages9
JournalAIDS
Volume21
Issue number18
DOIs
StatePublished - Dec 2007

Fingerprint

Uganda
Research
Health
Sexually Transmitted Diseases
HIV
Health Services
Referral and Consultation
Logistic Models
Economics
Demography

Keywords

  • Clinical trials
  • Ethics
  • Human experimentation
  • Research
  • Risks and benefits

ASJC Scopus subject areas

  • Immunology and Allergy
  • Immunology

Cite this

Thiessen, C., Ssekubugu, R., Wagman, J., Kiddugavu, M., Wawer, M. J., Emanuel, E., ... Grady, C. (2007). Personal and community benefits and harms of research: Views from Rakai, Uganda. AIDS, 21(18), 2493-2501. https://doi.org/10.1097/QAD.0b013e3282f029d3

Personal and community benefits and harms of research : Views from Rakai, Uganda. / Thiessen, Carrie; Ssekubugu, Robert; Wagman, Jennifer; Kiddugavu, Mohammed; Wawer, Maria J; Emanuel, Ezekiel; Gray, Ronald H; Serwadda, David; Grady, Christine.

In: AIDS, Vol. 21, No. 18, 12.2007, p. 2493-2501.

Research output: Contribution to journalArticle

Thiessen, C, Ssekubugu, R, Wagman, J, Kiddugavu, M, Wawer, MJ, Emanuel, E, Gray, RH, Serwadda, D & Grady, C 2007, 'Personal and community benefits and harms of research: Views from Rakai, Uganda', AIDS, vol. 21, no. 18, pp. 2493-2501. https://doi.org/10.1097/QAD.0b013e3282f029d3
Thiessen C, Ssekubugu R, Wagman J, Kiddugavu M, Wawer MJ, Emanuel E et al. Personal and community benefits and harms of research: Views from Rakai, Uganda. AIDS. 2007 Dec;21(18):2493-2501. https://doi.org/10.1097/QAD.0b013e3282f029d3
Thiessen, Carrie ; Ssekubugu, Robert ; Wagman, Jennifer ; Kiddugavu, Mohammed ; Wawer, Maria J ; Emanuel, Ezekiel ; Gray, Ronald H ; Serwadda, David ; Grady, Christine. / Personal and community benefits and harms of research : Views from Rakai, Uganda. In: AIDS. 2007 ; Vol. 21, No. 18. pp. 2493-2501.
@article{360706cf161e42f5b2442c5d88ea4d0c,
title = "Personal and community benefits and harms of research: Views from Rakai, Uganda",
abstract = "OBJECTIVES: To assess what individuals in low-income countries perceive as benefits and harms of population-based HIV/STD research. DESIGN: A total of 811 research participants, research decliners, and community opinion leaders in the Rakai District, Uganda were surveyed. Types of personal and community benefits and harms, as well as rates of reporting great personal and community benefit were assessed. METHODS: Using logistic regression, demographic characteristics, participant and opinion leader status, use of Rakai Health Sciences Program (RHSP) services, and perceived research effects were entered as predictors of reported great personal and great community benefit. RESULTS: Most respondents thought that RHSP research was of great personal (85{\%}) and community (88{\%}) benefit. The perception that the RHSP was a great personal benefit was correlated with female sex, post-secondary education, frequent use of RHSP-sponsored medical services, health knowledge gains, and increased hope for future health improvements. Persons of non-Baganda ethnicity and 30-39 year-olds were less likely to believe research was personally beneficial. Regarding research as a great community benefit was associated with reported health knowledge gains, greater hope for Rakai residents' future health, and local economic benefit. Decliners were the most likely to report a personal harm, while community opinion leaders identified community harms at the highest rates. CONCLUSIONS: The majority of Rakai residents report that HIV/STD research has enhanced their own and their communities' welfare. Different factors were associated with the belief that research is a personal versus community benefit. Variations in participant, decliner, and community opinion leader perceptions highlight inadequacies of current community consultation mechanisms.",
keywords = "Clinical trials, Ethics, Human experimentation, Research, Risks and benefits",
author = "Carrie Thiessen and Robert Ssekubugu and Jennifer Wagman and Mohammed Kiddugavu and Wawer, {Maria J} and Ezekiel Emanuel and Gray, {Ronald H} and David Serwadda and Christine Grady",
year = "2007",
month = "12",
doi = "10.1097/QAD.0b013e3282f029d3",
language = "English (US)",
volume = "21",
pages = "2493--2501",
journal = "AIDS",
issn = "0269-9370",
publisher = "Lippincott Williams and Wilkins",
number = "18",

}

TY - JOUR

T1 - Personal and community benefits and harms of research

T2 - Views from Rakai, Uganda

AU - Thiessen, Carrie

AU - Ssekubugu, Robert

AU - Wagman, Jennifer

AU - Kiddugavu, Mohammed

AU - Wawer, Maria J

AU - Emanuel, Ezekiel

AU - Gray, Ronald H

AU - Serwadda, David

AU - Grady, Christine

PY - 2007/12

Y1 - 2007/12

N2 - OBJECTIVES: To assess what individuals in low-income countries perceive as benefits and harms of population-based HIV/STD research. DESIGN: A total of 811 research participants, research decliners, and community opinion leaders in the Rakai District, Uganda were surveyed. Types of personal and community benefits and harms, as well as rates of reporting great personal and community benefit were assessed. METHODS: Using logistic regression, demographic characteristics, participant and opinion leader status, use of Rakai Health Sciences Program (RHSP) services, and perceived research effects were entered as predictors of reported great personal and great community benefit. RESULTS: Most respondents thought that RHSP research was of great personal (85%) and community (88%) benefit. The perception that the RHSP was a great personal benefit was correlated with female sex, post-secondary education, frequent use of RHSP-sponsored medical services, health knowledge gains, and increased hope for future health improvements. Persons of non-Baganda ethnicity and 30-39 year-olds were less likely to believe research was personally beneficial. Regarding research as a great community benefit was associated with reported health knowledge gains, greater hope for Rakai residents' future health, and local economic benefit. Decliners were the most likely to report a personal harm, while community opinion leaders identified community harms at the highest rates. CONCLUSIONS: The majority of Rakai residents report that HIV/STD research has enhanced their own and their communities' welfare. Different factors were associated with the belief that research is a personal versus community benefit. Variations in participant, decliner, and community opinion leader perceptions highlight inadequacies of current community consultation mechanisms.

AB - OBJECTIVES: To assess what individuals in low-income countries perceive as benefits and harms of population-based HIV/STD research. DESIGN: A total of 811 research participants, research decliners, and community opinion leaders in the Rakai District, Uganda were surveyed. Types of personal and community benefits and harms, as well as rates of reporting great personal and community benefit were assessed. METHODS: Using logistic regression, demographic characteristics, participant and opinion leader status, use of Rakai Health Sciences Program (RHSP) services, and perceived research effects were entered as predictors of reported great personal and great community benefit. RESULTS: Most respondents thought that RHSP research was of great personal (85%) and community (88%) benefit. The perception that the RHSP was a great personal benefit was correlated with female sex, post-secondary education, frequent use of RHSP-sponsored medical services, health knowledge gains, and increased hope for future health improvements. Persons of non-Baganda ethnicity and 30-39 year-olds were less likely to believe research was personally beneficial. Regarding research as a great community benefit was associated with reported health knowledge gains, greater hope for Rakai residents' future health, and local economic benefit. Decliners were the most likely to report a personal harm, while community opinion leaders identified community harms at the highest rates. CONCLUSIONS: The majority of Rakai residents report that HIV/STD research has enhanced their own and their communities' welfare. Different factors were associated with the belief that research is a personal versus community benefit. Variations in participant, decliner, and community opinion leader perceptions highlight inadequacies of current community consultation mechanisms.

KW - Clinical trials

KW - Ethics

KW - Human experimentation

KW - Research

KW - Risks and benefits

UR - http://www.scopus.com/inward/record.url?scp=36349004701&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=36349004701&partnerID=8YFLogxK

U2 - 10.1097/QAD.0b013e3282f029d3

DO - 10.1097/QAD.0b013e3282f029d3

M3 - Article

VL - 21

SP - 2493

EP - 2501

JO - AIDS

JF - AIDS

SN - 0269-9370

IS - 18

ER -