BIOPRESERVATION AND BIOBANKING Volume 9, Number 1, 2011 ª Mary Ann Liebert, Inc. DOI: 10.1089/bio.2010.0025
Public Perception and Attitude of Saudis Toward Organ and Tissue Donation Mohammed A. Al-Jumah and Mostafa A. Abolfotouh
Biobanks depend on the willingness of people to contribute samples for both research and storage; however, the requirements to perform research on biobanked samples are different than the requirements for their use in organ transplants. The objectives of this study were (1) to characterize public attitudes toward tissue and organ donation for transplantation and biobanking and (2) to identify significant predictors of these attitudes. A crosssectional study was conducted with a total of 1051 adult subjects, all of whom accompanied their ill relatives to the outpatient clinics at King Abdulaziz Medical City. All subjects were given an interview questionnaire about their previous healthcare experiences and an attitude scale to assess their willingness to participate in organ donation for transplantation or tissue donation for research. A total of 64.7% of all participants reported having a positive attitude toward organ donation, and 68.8% of participants reported having a positive attitude toward biobanking. There was a significant and direct correlation between the attitude score related to organ donation and the attitude score related to tissue donation for research (r ¼ 0.513, P < 0.001). After adjusting for other variables by multiple regression analyses, a positive attitude toward either organ donation or tissue donation for research was significantly more prevalent among females (P < 0.001), those who had previously participated in health-related research (P < 0.001 and P ¼ 0.002, respectively), and those who were aware of organ retention controversies (P ¼ 0.036 and P ¼ 0.001, respectively). Other significant predictors of positive attitudes toward only biobanking were a history of previous blood tests (P ¼ 0.038) and the completion of secondary education (P < 0.001). The attitude of the Saudi public is favorable toward both organ donation and tissue biobanking. Attitudes about the 2 types of donations are related. Previous participation in health-related research and awareness of organ retention controversies are significant predictors of attitudes toward both types of donations.
although people generally express favorable views toward organ donation, only few of them actually agree to donate before they die or agree to have the organs of family members donated upon their death.3 Thus, in-depth interviews were recommended to further explore this national trend. Requirements for research are different than requirements for transplantation, and it is important to understand that anyone at any age may be a research donor candidate. A history of disease does not preclude donation for medical research. Indeed, scientists frequently seek affected tissues to investigate potential treatments. Human tissues may be obtained after death or from living donors. The retention of organs and tissues for research can take place after death if relatives give their consent. For the living, samples of human tissue can often be donated after surgeries. For example, not all of the tissue that is collected during surgery is needed for diagnosis and other clinical care, and excess tissue samples may be stored as part of a patient’s medical record.9
Introduction
O
rgan transplantation is truly one of the miracles of modern medicine. It has saved the lives of many patients and improved the quality of life for many more.1 In Saudi Arabia, despite efforts to tackle the problem of organdonor shortages, the growth in the number of organ donors has not paralleled that of the organ transplant waiting list, and lack of organ donors remains a major limiting factor in transplantation.2,3 Previous research indicates that the major factor that limits donation is the low donor consent rate.4 The Saudi Center for Organ Transplantation (SCOT) was established in 1984 as a governmental agency that supervises all activities of organ donation and transplantation. The SCOT has achieved considerable success rates, and its efforts have benefited a significant number of patients.5,6 Previous studies of young people and students in the Kingdom of Saudi Arabia showed a higher percentage of acceptance of the concept of organ donation5,7,8; however,
Biobanking Section, King Abdullah International Medical Research Center, King Saud Bin-Abdulaziz University for Health Sciences (KSAU-HS), Riyadh, Saudi Arabia.
21
22 Many studies have investigated the attitude of the Saudi public toward donating organs for transplantation, but none of these studies has investigated the attitude of Saudis toward the donation of tissue for research purposes or biobanking. The objective of this study was to investigate the correlation between the attitudes of Saudis regarding organ donation for transplantation and their attitudes about tissue donation for research purposes with the following aims: (1) to identify public attitudes regarding organ donation for transplantation and research involving the storage and use of human tissues from which genetic information may be derived and (2) to identify significant predictors of favorable attitudes toward these donations.
Methods Study design A cross-sectional study was conducted with a total of 1051 adult subjects, all of whom accompanied their ill relatives to the outpatient clinics at King Abdulaziz Medical City.
Study population and sampling techniques Adults attending the outpatient clinics at King Abdulaziz Medical City, because of their involvement with healthcare services, were hypothesized to be supportive of medical research, with high levels of willingness to contribute excess surgical tissue for research. Therefore, as a first step toward understanding the attitudes of Saudis toward organ and tissue donation, a subset of this population was surveyed. In a similar survey of the general population in Ireland, less than 10% of respondents had previously participated in a medical or health research study.10 Based on an average of 10% participation in biomedical research studies, with a precision of 2% and a 95% confidence limit, the calculated sample size was 864. Using these estimates as a guideline, we recruited a total of 1200 adult subjects of both genders who were at least 18 years old to make up the study group.
Techniques Interview questionnaire. A specific interview schedule was devised because no single existing research questionnaire adequately addressed all of the aims of this particular study. The interviews were supplemented with other relevant research questionnaires.10 The use of questions from relevant international questionnaires was intended to maximize the comparability of the data collected in this study with data collected from other investigations. The content and feasibility of the questionnaire were validated through collaboration with various experts at King Abdullah International Medical Research Center (KAIMRC) to ensure the relevance and clarity of the questions. Several additions and amendments were made to ensure that the questions were valid in a Saudi context. The interview schedule was separated into 4 sections covering the following topics: (1) personal characteristics and health status; (2) blood or organ donation, including information about whether the participant had ever had a blood test or other medical tests, had donated blood, or was willing to donate blood; (3) participation in medical or health-related research; and (4) organ retention. The participants were
AL-JUMAH AND ABOLFOTOUH asked if they had heard of organ retention, if they had talked about organ retention with anyone, and if they had read newspaper articles or listened to radio reports about the issue. Attitude toward organ donation. Participants were asked to answer 4 questions regarding their attitudes toward organ donation, including their willingness to donate organs while alive and/or after death. Attitude was measured on a 5-point Likert scale as follows: strongly agree (4), agree (3), not sure (2), disagree (1), or strongly disagree (0). The total attitude score and the percentage score for each participant were calculated. For subsequent analyses, scores of 0 and 1 were combined to form the category ‘‘negative attitude,’’ a score of 2 was categorized as a neutral attitude, and scores of 3 and 4 were combined to form the category ‘‘positive attitude.’’ Attitude toward biomedical research/biobanking scale. The scale used to assess attitudes toward biomedical research and biobanking uses a 5-point Likert scale to evaluate the participants’ attitudes toward, and beliefs about, biomedical research. The statements focus on beliefs about medicines and medical research, attitudes toward genetic research, willingness to contribute tissue samples to medical research, and desire for feedback. Participants were asked to respond to each question with strongly agree (4), agree (3), not sure (2), disagree (1), or strongly disagree (0). Negative attitude statements were reverse scored such that 4 points were given for a response of ‘‘strongly disagree’’ and 0 points for ‘‘strongly agree.’’ For subsequent analyses, scores of 0 and 1 were combined to form the ‘‘negative attitude’’ category, a score of 2 was considered neutral, and scores of 3 and 4 were combined to form the ‘‘positive attitude’’ category. Research coordinators and research assistants from KAIMRC were trained to conduct the interviews. Four training sessions were organized for interviewers to familiarize them with the issues of medical research using human tissue, the recent controversies that have been reported in the media regarding these issues, areas where particular sensitivity was needed, and detailed instructions on how to conduct the interviews. Collection of data was supervised by the investigators for 1 month to ensure that proper procedures were followed. Daily meetings were held between the data collectors and field supervisors following the field activities to troubleshoot and solve problems, check the accuracy and completeness of the data collection forms, and emphasize standardization of procedures.
Statistical analyses SPSS version 17 (SPSS, Inc., Chicago, IL) was used for data analysis. The w2 test was used as a test of significance to compare categorical data. The Mann–Whitney, Kruskal– Wallis, Student’s t, and analysis of variance tests were used as tests of significance to compare numerical data. Multiple regression analyses were performed to determine significant predictors of positive attitudes toward organ donation for transplantation and willingness of the participant to donate surgical tissues for research purposes. The choice of the variables in the model was based on the results of a univariate analysis such that only the significant variables in the univariate analysis were subsequently used in the multiple regression analysis. For all statistical analyses, a P value of
Public Perception and Attitude of Saudis Toward Organ and Tissue Donation Mohammed A. Al-Jumah and Mostafa A. Abolfotouh
Biobanks depend on the willingness of people to contribute samples for both research and storage; however, the requirements to perform research on biobanked samples are different than the requirements for their use in organ transplants. The objectives of this study were (1) to characterize public attitudes toward tissue and organ donation for transplantation and biobanking and (2) to identify significant predictors of these attitudes. A crosssectional study was conducted with a total of 1051 adult subjects, all of whom accompanied their ill relatives to the outpatient clinics at King Abdulaziz Medical City. All subjects were given an interview questionnaire about their previous healthcare experiences and an attitude scale to assess their willingness to participate in organ donation for transplantation or tissue donation for research. A total of 64.7% of all participants reported having a positive attitude toward organ donation, and 68.8% of participants reported having a positive attitude toward biobanking. There was a significant and direct correlation between the attitude score related to organ donation and the attitude score related to tissue donation for research (r ¼ 0.513, P < 0.001). After adjusting for other variables by multiple regression analyses, a positive attitude toward either organ donation or tissue donation for research was significantly more prevalent among females (P < 0.001), those who had previously participated in health-related research (P < 0.001 and P ¼ 0.002, respectively), and those who were aware of organ retention controversies (P ¼ 0.036 and P ¼ 0.001, respectively). Other significant predictors of positive attitudes toward only biobanking were a history of previous blood tests (P ¼ 0.038) and the completion of secondary education (P < 0.001). The attitude of the Saudi public is favorable toward both organ donation and tissue biobanking. Attitudes about the 2 types of donations are related. Previous participation in health-related research and awareness of organ retention controversies are significant predictors of attitudes toward both types of donations.
although people generally express favorable views toward organ donation, only few of them actually agree to donate before they die or agree to have the organs of family members donated upon their death.3 Thus, in-depth interviews were recommended to further explore this national trend. Requirements for research are different than requirements for transplantation, and it is important to understand that anyone at any age may be a research donor candidate. A history of disease does not preclude donation for medical research. Indeed, scientists frequently seek affected tissues to investigate potential treatments. Human tissues may be obtained after death or from living donors. The retention of organs and tissues for research can take place after death if relatives give their consent. For the living, samples of human tissue can often be donated after surgeries. For example, not all of the tissue that is collected during surgery is needed for diagnosis and other clinical care, and excess tissue samples may be stored as part of a patient’s medical record.9
Introduction
O
rgan transplantation is truly one of the miracles of modern medicine. It has saved the lives of many patients and improved the quality of life for many more.1 In Saudi Arabia, despite efforts to tackle the problem of organdonor shortages, the growth in the number of organ donors has not paralleled that of the organ transplant waiting list, and lack of organ donors remains a major limiting factor in transplantation.2,3 Previous research indicates that the major factor that limits donation is the low donor consent rate.4 The Saudi Center for Organ Transplantation (SCOT) was established in 1984 as a governmental agency that supervises all activities of organ donation and transplantation. The SCOT has achieved considerable success rates, and its efforts have benefited a significant number of patients.5,6 Previous studies of young people and students in the Kingdom of Saudi Arabia showed a higher percentage of acceptance of the concept of organ donation5,7,8; however,
Biobanking Section, King Abdullah International Medical Research Center, King Saud Bin-Abdulaziz University for Health Sciences (KSAU-HS), Riyadh, Saudi Arabia.
21
22 Many studies have investigated the attitude of the Saudi public toward donating organs for transplantation, but none of these studies has investigated the attitude of Saudis toward the donation of tissue for research purposes or biobanking. The objective of this study was to investigate the correlation between the attitudes of Saudis regarding organ donation for transplantation and their attitudes about tissue donation for research purposes with the following aims: (1) to identify public attitudes regarding organ donation for transplantation and research involving the storage and use of human tissues from which genetic information may be derived and (2) to identify significant predictors of favorable attitudes toward these donations.
Methods Study design A cross-sectional study was conducted with a total of 1051 adult subjects, all of whom accompanied their ill relatives to the outpatient clinics at King Abdulaziz Medical City.
Study population and sampling techniques Adults attending the outpatient clinics at King Abdulaziz Medical City, because of their involvement with healthcare services, were hypothesized to be supportive of medical research, with high levels of willingness to contribute excess surgical tissue for research. Therefore, as a first step toward understanding the attitudes of Saudis toward organ and tissue donation, a subset of this population was surveyed. In a similar survey of the general population in Ireland, less than 10% of respondents had previously participated in a medical or health research study.10 Based on an average of 10% participation in biomedical research studies, with a precision of 2% and a 95% confidence limit, the calculated sample size was 864. Using these estimates as a guideline, we recruited a total of 1200 adult subjects of both genders who were at least 18 years old to make up the study group.
Techniques Interview questionnaire. A specific interview schedule was devised because no single existing research questionnaire adequately addressed all of the aims of this particular study. The interviews were supplemented with other relevant research questionnaires.10 The use of questions from relevant international questionnaires was intended to maximize the comparability of the data collected in this study with data collected from other investigations. The content and feasibility of the questionnaire were validated through collaboration with various experts at King Abdullah International Medical Research Center (KAIMRC) to ensure the relevance and clarity of the questions. Several additions and amendments were made to ensure that the questions were valid in a Saudi context. The interview schedule was separated into 4 sections covering the following topics: (1) personal characteristics and health status; (2) blood or organ donation, including information about whether the participant had ever had a blood test or other medical tests, had donated blood, or was willing to donate blood; (3) participation in medical or health-related research; and (4) organ retention. The participants were
AL-JUMAH AND ABOLFOTOUH asked if they had heard of organ retention, if they had talked about organ retention with anyone, and if they had read newspaper articles or listened to radio reports about the issue. Attitude toward organ donation. Participants were asked to answer 4 questions regarding their attitudes toward organ donation, including their willingness to donate organs while alive and/or after death. Attitude was measured on a 5-point Likert scale as follows: strongly agree (4), agree (3), not sure (2), disagree (1), or strongly disagree (0). The total attitude score and the percentage score for each participant were calculated. For subsequent analyses, scores of 0 and 1 were combined to form the category ‘‘negative attitude,’’ a score of 2 was categorized as a neutral attitude, and scores of 3 and 4 were combined to form the category ‘‘positive attitude.’’ Attitude toward biomedical research/biobanking scale. The scale used to assess attitudes toward biomedical research and biobanking uses a 5-point Likert scale to evaluate the participants’ attitudes toward, and beliefs about, biomedical research. The statements focus on beliefs about medicines and medical research, attitudes toward genetic research, willingness to contribute tissue samples to medical research, and desire for feedback. Participants were asked to respond to each question with strongly agree (4), agree (3), not sure (2), disagree (1), or strongly disagree (0). Negative attitude statements were reverse scored such that 4 points were given for a response of ‘‘strongly disagree’’ and 0 points for ‘‘strongly agree.’’ For subsequent analyses, scores of 0 and 1 were combined to form the ‘‘negative attitude’’ category, a score of 2 was considered neutral, and scores of 3 and 4 were combined to form the ‘‘positive attitude’’ category. Research coordinators and research assistants from KAIMRC were trained to conduct the interviews. Four training sessions were organized for interviewers to familiarize them with the issues of medical research using human tissue, the recent controversies that have been reported in the media regarding these issues, areas where particular sensitivity was needed, and detailed instructions on how to conduct the interviews. Collection of data was supervised by the investigators for 1 month to ensure that proper procedures were followed. Daily meetings were held between the data collectors and field supervisors following the field activities to troubleshoot and solve problems, check the accuracy and completeness of the data collection forms, and emphasize standardization of procedures.
Statistical analyses SPSS version 17 (SPSS, Inc., Chicago, IL) was used for data analysis. The w2 test was used as a test of significance to compare categorical data. The Mann–Whitney, Kruskal– Wallis, Student’s t, and analysis of variance tests were used as tests of significance to compare numerical data. Multiple regression analyses were performed to determine significant predictors of positive attitudes toward organ donation for transplantation and willingness of the participant to donate surgical tissues for research purposes. The choice of the variables in the model was based on the results of a univariate analysis such that only the significant variables in the univariate analysis were subsequently used in the multiple regression analysis. For all statistical analyses, a P value of
