Saudi views on consenting for research on medical records and leftover tissue samples

<p>Abstract</p> <p>Background</p> <p>Consenting for retrospective medical records-based research (MR) and leftover tissue-based research (TR) continues to be controversial. Our objective was to survey Saudis attending outpatient clinics at a tertiary care hospital on th...

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Main Authors: Al Gaai Eman A, Abdulhameed Hunida M, Hammami Muhammad M, Al-Qadire Mohammad M
Format: Article
Language:English
Published: BMC 2010-10-01
Series:BMC Medical Ethics
Online Access:http://www.biomedcentral.com/1472-6939/11/18
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author Al Gaai Eman A
Abdulhameed Hunida M
Hammami Muhammad M
Al-Qadire Mohammad M
author_facet Al Gaai Eman A
Abdulhameed Hunida M
Hammami Muhammad M
Al-Qadire Mohammad M
author_sort Al Gaai Eman A
collection DOAJ
description <p>Abstract</p> <p>Background</p> <p>Consenting for retrospective medical records-based research (MR) and leftover tissue-based research (TR) continues to be controversial. Our objective was to survey Saudis attending outpatient clinics at a tertiary care hospital on their personal preference and perceptions of norm and current practice in relation to consenting for MR and TR.</p> <p>Methods</p> <p>We surveyed 528 Saudis attending clinics at a tertiary care hospital in Saudi Arabia to explore their preferences and perceptions of norm and current practice. The respondents selected one of 7 options from each of 6 questionnaires.</p> <p>Results</p> <p>Respondents' mean (SD) age was 33 (11) years, 42% were males, 56% were patients, 84% had ≥ secondary school education, and 10% had previously volunteered for research. Respectively, 40% and 49% perceived that the norm is to conduct MR and TR without consent and 38% and 37% with general or proposal-specific consent; the rest objected to such research. There was significant difference in the distribution of choices according to health status (patients vs. companions) for MR (adjusted Kruskal-Wallis test P = 0.03) but not to age group, gender, education level, or previous participation in research (unadjusted P = 0.02 - 0.59). The distributions of perceptions of current practice and norm were similar (unadjusted Marginal Homogeneity test P = 0.44 for MR and P = 0.89 for TR), whereas the distributions of preferences and perceptions of norm were different (adjusted P = 0.09 for MR and P = 0.02 for TR). The distributions of perceptions of norm, preferences, and perceptions of current practice for MR were significantly different from those of TR (adjusted P < 0.009 for all).</p> <p>Conclusions</p> <p>We conclude that: 1) there is a considerable diversity among Saudi views regarding consenting for retrospective research which may be related to health status, 2) the distribution of perceptions of norm was similar to the distribution of perceptions of current practice but different from that of preferences, and 3) MR and TR are perceived differently in regard to consenting.</p>
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spelling doaj.art-3082f517f76349909aa29d177de5445b2022-12-22T01:57:04ZengBMCBMC Medical Ethics1472-69392010-10-011111810.1186/1472-6939-11-18Saudi views on consenting for research on medical records and leftover tissue samplesAl Gaai Eman AAbdulhameed Hunida MHammami Muhammad MAl-Qadire Mohammad M<p>Abstract</p> <p>Background</p> <p>Consenting for retrospective medical records-based research (MR) and leftover tissue-based research (TR) continues to be controversial. Our objective was to survey Saudis attending outpatient clinics at a tertiary care hospital on their personal preference and perceptions of norm and current practice in relation to consenting for MR and TR.</p> <p>Methods</p> <p>We surveyed 528 Saudis attending clinics at a tertiary care hospital in Saudi Arabia to explore their preferences and perceptions of norm and current practice. The respondents selected one of 7 options from each of 6 questionnaires.</p> <p>Results</p> <p>Respondents' mean (SD) age was 33 (11) years, 42% were males, 56% were patients, 84% had ≥ secondary school education, and 10% had previously volunteered for research. Respectively, 40% and 49% perceived that the norm is to conduct MR and TR without consent and 38% and 37% with general or proposal-specific consent; the rest objected to such research. There was significant difference in the distribution of choices according to health status (patients vs. companions) for MR (adjusted Kruskal-Wallis test P = 0.03) but not to age group, gender, education level, or previous participation in research (unadjusted P = 0.02 - 0.59). The distributions of perceptions of current practice and norm were similar (unadjusted Marginal Homogeneity test P = 0.44 for MR and P = 0.89 for TR), whereas the distributions of preferences and perceptions of norm were different (adjusted P = 0.09 for MR and P = 0.02 for TR). The distributions of perceptions of norm, preferences, and perceptions of current practice for MR were significantly different from those of TR (adjusted P < 0.009 for all).</p> <p>Conclusions</p> <p>We conclude that: 1) there is a considerable diversity among Saudi views regarding consenting for retrospective research which may be related to health status, 2) the distribution of perceptions of norm was similar to the distribution of perceptions of current practice but different from that of preferences, and 3) MR and TR are perceived differently in regard to consenting.</p>http://www.biomedcentral.com/1472-6939/11/18
spellingShingle Al Gaai Eman A
Abdulhameed Hunida M
Hammami Muhammad M
Al-Qadire Mohammad M
Saudi views on consenting for research on medical records and leftover tissue samples
BMC Medical Ethics
title Saudi views on consenting for research on medical records and leftover tissue samples
title_full Saudi views on consenting for research on medical records and leftover tissue samples
title_fullStr Saudi views on consenting for research on medical records and leftover tissue samples
title_full_unstemmed Saudi views on consenting for research on medical records and leftover tissue samples
title_short Saudi views on consenting for research on medical records and leftover tissue samples
title_sort saudi views on consenting for research on medical records and leftover tissue samples
url http://www.biomedcentral.com/1472-6939/11/18
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