Knowledge about stem cell sources and obstacles in donation of bone marrow and peripheral blood stem cells: a cross-sectional survey from Ha’il city to track the prospects of regenerative medicine in Saudi Arabia

The scope of current study is contextualized within the sociopolitical and ethical status of stem cell research and treatment at international and national level. Saudi healthcare vision focuses upon expanding stem cell donation programs and establishing stem cell therapy programs that are medically safe, ethically, and socially approved in the national context [22]. These initiatives are necessary to control the burden of non-communicable diseases and improve the quality of life amongst the Saudi population [23].

The field of regenerative medicine is confronting significant challenges in satisfactory implementation of stem-cell based therapies due to low rates of stem cell donation in various countries and less professional conduct in delivery of stem-cell based treatment by international agencies. The importance of current study is implicit in this local and global context because most of the Saudi citizens who sought stem-cell based therapies are currently relying on international donor agencies for retrieval of stem cells due to extremely low rates of stem-cell donation in the country. Moreover, patients approach international stem cell clinics for stem-cell based treatment due to the non-availability of these treatment facilities in Saudi Arabia and Middle East region. The study has several strengths as it provides first-hand information by conducting a first large-scale survey in Ha’il region of Saudi Arabia. The study questionnaire comprises of simple short items thus provides accurate estimates about levels of awareness and stem-cell donation registration status in target population. The scope of study aligns with the goals of any community health research that focuses on health risk prevention and health promotion. Study provides foundational evidence to develop local health education policies and program to promote stem cell donation behaviors in target population and control the health risks due to lack of information and awareness. Findings need to be interpreted keeping in view some of the study limitations. The research employed a cross-sectional online survey method and collected data from a sub-population in Ha’il city. The study sample comprises of respondents who have completed at least 14 years of formal education in various disciplines and were users of internet thus findings are not applicable to general population of Saudi Arabia. Moreover, participants completed online self-report questionnaire which may contribute to biased response pattern particularly noticed on a question that asked participant’s willingness to donate stem cells. Additionally, the survey assessed the obstacles by asking closed-ended questions with fixed response options and thus did not provide insight about any other hinderances in registration for stem donation. We discussed the findings keeping in view strengths and limitations of study and made some recommendation to increase awareness about stem cell sources, to promote stem cell donation behaviors and directions for future research.

The scientific literature reports that bone marrow is a rich source of CD34 + stem cells that could be used for myocardial repair to prevent heart failure in patients [24]. In our study, a large section of respondents did not consider bone marrow as source of stem cells. This finding has important implication in context of stem cell donation behaviors in Saudi Arabia because the King Faisal Specialist Hospital and Research Centre in Saudi Arabia primarily register donors for bone marrow stem cells transplant. Findings suggest that peoples’ perceptions about fatty tissues as source of stem cells was a significant predictor for willingness to donate stem. These findings have significant implications in context of regenerative medicine in Saudi Arabia, because adipose tissue have the potential to repair, maintain, or enhance various tissues. Moreover, human adipose tissue is ubiquitous and easily obtained in large quantities using a minimally invasive procedure thus retrieval of stem cells from fatty tissue is relatively simpler. Lastly, stem cell retrieved from fatty tissues have several clinical applications such as used to treat fibrosis, atrophy, retraction, and ulcers in patients who underwent radiation therapy [25]. This study validates that awareness about Saudi Stem Cell Registry was significantly associated with willingness to donate stem cells. Findings have significant implications to enhance the awareness through various means of mass communication and aligns with prior literature [26]. In current times, most people seek health information from internet and social media, that is also verified by results from the current survey. It is, therefore, recommended to develop educational and informational programs in consultation with approved agencies under the supervision of the health ministry. Findings showed that means of information significantly associated with willingness to donate and registration status. These findings imply that carefully designed health education programs that share information about authorized sources of stem cells, increase awareness about Saudi Stem Cell donor Registry will be useful to enhance levels of awareness in the community, will protect both donors and recipients of stem cells and will increase the rates of donation.

The survey shows that a higher proportion of respondents demonstrated willingness to donate stem whereas the rates of stem cell registration were low in this study sample. A plausible explanation for this discrepancy is the lack of awareness about donor agencies and procedures which is also flashed as a major obstacle in stem cell registration. This pattern of findings can also be explained in the context of resource dependence theory that explains donation behavior as pro-social behavior and determined by access to several resources including personal, social, and cultural [27]. At a personal level, enhancing awareness and knowledge may contribute positively to promoting stem cell registration. The chi-square analysis showed that having a first-degree relative with experience of stem-cell treatment was significantly associated with registration status for donation of stem cells. This shows that social circumstances may also influence donation behaviors. However, these inferences need to be validated in future research by exploring other social and cultural factors.

The current survey indirectly created an opportunity to make people aware about stem cell donation agencies and procedures by referring them to Donor Education Information Page [19] while asking their intent to donate. This awareness might have contributed to higher levels of willingness to donate in this study sample. Regardless of any contextual factors, the willingness to donate stem cells is a positive sign and it needs to be translated to actual donation behavior by resolving the barriers faced by respondents in stem cell registration.

Regenerative medicine is an emerging science and prior research shows that even health professionals are not well-equipped to guide patients about possibilities of donation, procedures, and agencies. A study from Nigeria reported that dentists have poor knowledge about use of stem cells despite holding positive attitudes [28]. Prior literature reports that medical and nursing students and health workers in Saudi Arabia have low levels of knowledge about various aspects of regenerative therapies and stem cell donation [29]. These findings underscore that public health education policies and programs should focus on propagating information about sources of stem cells, authorized donor agencies which collect stem cells and their procedures.

Our study demonstrated that concerns about impact on health was associated with non-registration for stem cells that aligns with findings from a Malaysian study where attitude about the potential side effects of HSC donation was negatively related with intention to donate among blood donors [21]. It is recommended that information about potential side effects be shared with the public and address their concerns to promote registration for stem cell donation. Moreover, findings indicated that one of the significant factors in non-registration was health conditions that did not allow them to donate stem cells. Apparently, it is true that people with certain health conditions that are experienced at severe levels cannot register for donation of stem cells. However, keeping in view the lack of adequate knowledge about these conditions, there is need to increase the awareness about eligibility criteria for donation of bone marrow and peripheral blood stem cells. Previous literature has demonstrated that development of proper guidelines that educate people with right information about donation risks and benefits along with eligibility are helpful to recruit voluntary hematopoietic stem cell donors [30]. This will help in propagation of accurate information and might help in increasing the registration rates for donation.

The individual and collective behaviors of Saudi people are strictly determined by the religious and cultural values. Individuals seek self-integrity through holding these values. Findings revealed that concerns about religious implications also relate to non-registration for stem cell donation. The field of regenerative medicine has encountered several controversies since the last two decades due to varying perceptions of people about sources of stems cells and heated debates on embryonic stem cell research in academic, political, religious, and public spheres in various regions of the world [31, 32]. Such debates are ongoing and influence the perceptions and donation behaviors of the public. The perceptions related to religious implications need to be addressed because “2003 fatwa” provides the religious framework that permit retrieval and use of stem cells obtained from ethically approved sources. Moreover, the Research Ethics Law decreed in 2010 provides clear ethical guidelines to conduct stem cell research in Saudi Arabia. This information should be widely disseminated to clarify the misperceptions of potential donors. Future research should focus on the identification of specific nature of conflicting views through qualitative data to gain deeper understanding of such hindrances.

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