Abstract
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 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. 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 = 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 = 0.002, respectively), and those who were aware of organ retention controversies (P = 0.036 and P = 0.001, respectively). Other significant predictors of positive attitudes toward only biobanking were a history of previous blood tests (P = 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.
Introduction
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, 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
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 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 χ2 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 <0.05 was considered significant.
Ethical considerations
The identities and addresses of all participants were unknown to the research team. All participants had the right to not participate in the study or to withdraw from the interview prior to its completion. The study protocol no. RR08/018 received ethical approval from the IRB of KAIMRC, National Guard Health Affairs, Riyadh, Saudi Arabia.
Results
Personal characteristics and health status
The study sample was comprised of 53% men and 47% women. A total of 86.4% were under 40 years old, 89.6% had completed secondary school, and 72% were currently employed.
Married participants constituted 56.7% of the sample, and 51.4% of all participants had children. The majority considered their health to be very good or excellent (78.3%), whereas only 1.7% considered their health to be poor. There were no significant gender differences (χ2 = 3.265, df = 2, P = 0.195). A history of one or more chronic diseases was reported in 14.5% of all participants, with a significantly higher prevalence among females than males (17.5% vs. 11.8%; P = 0.01). About half of the participants (51.3%) reported having been a hospital inpatient at some point. Women (57.9%) were significantly more likely to report having been a hospital inpatient than were men (45.6%) (χ2 = 15.45, P < 0.001).
Experience with the healthcare system and participation in research
The majority of participants (79.2%) reported having had a blood test at some point in their lives; however, only 7.9% reported having had a tissue test other than a blood test (Table 1). The majority of participants had not donated blood, with 43.1% reporting previous blood donation. Men were significantly more likely to report previous blood donation than were women (66.4% vs. 16.9%; χ2 = 252.79, P < 0.001). Only 1.2% of participants reported that the organs of a deceased family member had been donated for transplantation.
Significant difference at 1% level of significance.
χ2, Pearson chi-square.
Twenty-one percent of participants reported that they had taken part in a medical or health-related research study before the present survey was administered. Research participation generally involved filling in a questionnaire (71%), taking medication (4%), being interviewed (16%), or providing a blood or tissue sample (18%).
Almost two-thirds of participants (64%) were aware that blood or tissue samples are often stored as part of a person's medical records for their future care or treatment. Sources from which the participants learned this information were the mass media (40.1%), magazines (29.1%), and others.
Attitudes toward organ donation, biomedical research, and biobanking
As shown in Table 2, the majority of participants (78.2%) agreed or strongly agreed that organ donation after death is a humanitarian behavior, but only 59.8% were willing to donate their own organs after their death. Similarly, 71.4% of participants agreed or strongly agreed that organ donation while alive is a humanitarian behavior, but only 30.8% were willing to donate their own organs while they were still alive. Significantly more females than males held the opinion that organ donation after death is a humanitarian behavior (P < 0.001), and females were significantly more willing to donate their own organs after death than were males (P < 0.001). Overall, 64.7% of all participants reported favorable attitudes toward organ donation.
Significant difference at 1% level of significance.
Significant difference at 5% level of significance.
SD, standard deviation.
With regard to biomedical research and biobanking, 68.8% of participants reported favorable attitudes toward tissue donation for research purposes. The majority of participants were willing to allow use of their tissues for research purposes (70.1%). Females were significantly more willing than males to do so (85.4% vs. 72%; P < 0.001). Consistent with this finding is the fact that only 19.3% of those questioned agreed that their level of healthcare would be affected if they did not allow the use of their tissues for research purposes.
The majority of participants (87%) indicated that they would be willing to donate blood in the future. Men (88.8%) were more willing to do so than were women (84.4%) (χ2 = 16.90, P = 0.002). Only 27.3% of participants reported that they would be willing to allow the use of the organs or tissues of a deceased family member for research purposes, whereas 51.3% were unwilling and 21.4% were unsure. There were no significant differences between genders in the willingness to donate a deceased family member's organs (χ2 = 5.07, P = 0.28). Generally, the mean attitude score toward biomedical research as a percentage was 65.9% ± 14.0%. This score was significantly higher among females than among males (76.1% vs. 62.5%; P < 0.001).
Factors associated with attitudes toward organ donation and biobanking
The total attitude score toward biomedical research and biobanking was significantly correlated with the attitude score toward organ donation for transplantation (r = 0.53, P < 0.001). The majority of participants who reported favorable attitudes toward organ donation (n = 463, 81.2%) were willing to donate tissues for research purposes, compared with only 152 (47.1%) of those who were not in favor of organ donation (χ2 = 112.27, P < 0.001).
A univariate analysis was conducted to identify factors that may be associated with attitudes toward organ donation. Significant factors that were linked to attitudes toward organ donation included gender (P < 0.001), age (P = 0.01), education (P = 0.006), marital status (P < 0.001), having children (P < 0.001), previous participation in health-related research (P < 0.001), and awareness of organ retention controversies (P = 0.001). After adjusting for all of these significant factors, a multiple regression analysis was applied. The multiple regression analysis revealed that gender (P < 0.001), previous participation in research (P < 0.001), and awareness of organ retention controversy (P = 0.036) were the only significant predictors of attitudes toward organ donation (Table 3).
Significant difference at 1% level of significance.
Significant difference at 5% level of significance.
Z, Mann–Whitney test was applied.
A univariate analysis was conducted to identify factors that may be associated with willingness to allow the use of excess surgical tissue for research. Significant factors associated with this attitude included gender (P < 0.001), education (P < 0.001), having children (P = 0.032), a history of at least one previous blood test (P = 0.032), previous participation in research (P < 0.001), and an awareness of organ retention controversies (P < 0.001). After adjusting for these significant factors and applying a multiple regression analysis, all of these factors, except for having children (P = 0.12), were significant predictors of the willingness to allow the use of excess surgical tissue (Table 3).
Discussion
The shortage of transplantable organs is a global problem. In all countries, organ donation and transplantation activities are dependent on legislation, attitudes of the general public and healthcare professionals, and the levels of organization and coordination of transplantation units. Attitudes toward organ donation among the general public can be influenced by a variety of factors, including level of knowledge, level of education, and religion. Ethnicity, gender, and traditional values have also been identified as predictors of donation practices.11–13 In the present study, the percentage of mean attitude score toward organ donation was 64.17% ± 23.46%, which indicates that the Saudi public holds favorable views of organ donation. This finding is in concordance with the results of previous studies in the KSA of young people and students, who showed a higher level of acceptance of the concept of organ donation than did older individuals.5,7,8
Although people generally express favorable views toward organ donation, few actually agree to donate their own organs. 3 This finding is consistent with the results of the present study, in which the majority of participants agreed or strongly agreed that organ donation after their death or while alive is a humanitarian behavior. Yet, only 30.8% and approximately 60% were willing to donate their own organs while alive and after death, respectively. The results clearly indicate that the Saudi public is less willing to allow the use of tissue or organs from a deceased relative than they are to allow their own excess surgical tissue to be used. This was evident based on the fact that only 27.3% of participants reported a willingness to allow the use of organs or tissues from a deceased family member for research purposes. Ultimately, the decision to donate organs is often made by family members. Further research is necessary to identify the symbolic differences between organs or tissue from the living and the dead.
Many studies have investigated the attitudes of the Saudi public toward organ donation for transplantation,5,7,8 but none of these studies has investigated the attitudes toward tissue donation for research purposes or whether attitudes toward the 2 types of donations are interrelated. In the present study, attitudes toward biomedical research and biobanking were evaluated using a set of statements addressing the potential benefits and ethics of research. Generally, 68.8% of all participants reported a positive attitude toward biomedical research. This level of positive attitude may be due to the fact that many of the individuals who were interviewed had previously interacted with the healthcare system and reported various healthcare experiences, including blood tests (78%), blood donation (43%), being admitted to a hospital (51%), and previous participation in health-related research (21%). The attitude toward organ donation for transplantation was significantly correlated with the attitude toward tissue donation for biobanking.
When participants were presented with the hypothetical situation of having surgery and subsequently being asked whether their excess surgical tissue (ie, material that was properly removed as part of surgery and was in surplus after the required amount was used for patient care purposes) could be used in a research study; the majority of participants were willing to allow such use of their tissue (70.1%). Similarly, a Swedish study of 1000 participants found that 71% of participants agreed to the use of a donated tissue sample for genetic research. 14 The refusal to donate was even lower when patients themselves were approached in a previous study, 15 where almost all patients waiting for surgery (98.8%) were pleased and grateful to have been given an opportunity to take part in research by donation of their excess surgical tissues after surgery to benefit other people including their families.
Patient responses may not be free from social desirability, particularly when patients' doctors request their consent to allow their tissue to be used and stored for research. Patients may feel obliged to comply with such medical requests with little consideration of their personal preferences because of their perceived dependence on the doctor for recovery. Contrary to this argument, the present study revealed that only 19.3% of participants agreed that the level of healthcare they received would be affected if they did not allow the use of their tissues for research purposes. This finding is in agreement with that of Lindblad et al., 16 who found that less than 1% of the public was motivated by a fear that refusal to donate would affect their relationships with healthcare personnel.
Prior participation in medical research has also been found to positively influence willingness to participate in such research. 17 In the present study, 21% of participants reported taking part in a medical or health-related research study before this survey was administered. Those individuals who had previously participated in health-related research were significantly more willing than other participants to donate organs for transplantation and to allow the use of their surplus surgical tissues for biomedical research.
The controversy over the removal, retention, storage, and disposal of human organs postmortem is deeply emotional. The British Retained Organs Commission 18 has argued that the organ retention controversy has led to widespread suspicion and erosion of trust in the honesty of the medical profession among the general public. Almost two-thirds of participants (64%) indicated that they had heard of organ retention controversies. It appears that the Saudi public is more informed about this controversy than the British public because only 34% of participants in a United Kingdom study reported being aware of the organ retention controversy. 18 However, the United Kingdom study included younger participants (aged 15 years and older), whereas the present study sampled participants aged 18 years and older. Further, it is likely that the Saudi study participants have been exposed to more media reports regarding organ donation controversies because the present study was conducted 5 years after the United Kingdom study. The sources of information from which individuals heard about the organ donation controversy included mass media (40.1%) and magazines (29.1%). Participants who were aware of tissue storage were significantly more likely to allow use of their tissues for research purposes and were more likely to be willing to donate organs for transplantation than were participants who were unaware of tissue storage.
The individuals who were in favor of donation were older, 19 were more educated, and had a more positive attitude toward medical and genetic research.16,20 In the present study, those who had completed secondary education were significantly more in favor of tissue donation, but not more in favor of organ donation, than those participants with less education.
It was interesting that the female participants were more willing to donate organs for transplantation after death, more willing to allow use of excess surgical tissues for research purposes, and more motivated to donate organs or tissues for biomedical research. This might be attributed to the fact that the female participants were more engaged with the healthcare system because of their increased prevalence of chronic diseases, increased likelihood of previous hospitalizations, and higher rate of previous tissue testing compared with males. Previous blood testing was a significant predictor of attitudes toward biobanking.
The main limitation of the present study is that the participants who were interviewed were recruited from Riyadh only. It is possible that regional differences could affect our results, and the attitudes expressed in the interviews may not be representative of the general public of Saudi Arabia. Riyadh was chosen because it is the largest city in the KSA, which made it possible to ensure that respondents were demographically representative of the general population with regard to age, sex, work status, and social class; however, we need to validate our findings using a sample population that covers the whole of the country.
Conclusion
In conclusion, participants were in favor of both organ donation for transplantation and tissue donation for research. Female gender, previous participation in health-related research, and awareness of the organ retention controversy were significant predictors of a favorable attitude toward organ and tissue donation. Previous blood testing and completion of secondary education were significant predictors of a positive attitude toward tissue biobanking.
Many of the individuals who were interviewed had previous experience with the healthcare system and reported various healthcare experiences, such as blood tests, tissue tests, and inpatient hospital treatment; however, participants were generally quite supportive of medical research, with high levels of willingness to contribute excess surgical tissue for research and storage. This willingness does not depend on the public's being well informed or having trust in experts and institutions. These findings suggest that the public is generally aware of and committed to making a contribution to organ donation and to research and related activities in the healthcare system for their benefit and for the benefit of future generations.
Footnotes
Acknowledgments
The authors are indebted to the research team who helped with data collection: Mr. Abdulrahman Al-Shagawi, Ms. Hadeel Al-Thahery, Ms. Manal Al-Hamdan, Ms. Reeham Sheblaq, and Ms. Samar Al Saleh.
Authors Disclosure Statement
Funding for this project was received from King Abdulaziz City for Science and Technology (KACST). The authors declare that there are no conflicts of interest.
