Abstract: Purpose: Biospecimen repositories and big data generated from clinical research are critically important in advancing patient-centered healthcare. However, ethical considerations arising from reusing clinical samples and health records for subsequent research pose a hurdle for big-data health research. This study aims to assess the public’s opinions in Jordan toward providing blanket consent for using biospecimens and health records in research.
Participants and Methods: A cross-sectional study utilizing a self-reported questionnaire was carried out in different cities in Jordan, targeting adult participants. Outcome variables included awareness of clinical research, participation in clinical research, and opinions toward providing open access to clinical samples and records for research purposes. Descriptive analysis was utilized for reporting the outcome as frequency (percentages) out of the total responses. Univariate and multivariate logistic regression were used to investigate the association between independent variables and the outcome of interest.
Results: A total of 1033 eligible participants completed the questionnaire. Although the majority (90%) were aware of clinical research, only 24% have ever participated in this type of research. About half (51%) agreed on providing blanket consent for the use of clinical samples, while a lower percentage (43%) agreed on providing open access to their health records. Privacy concerns and lack of trust in the researcher were cited as major barriers to providing blanket consent. Participation in clinical research and having health insurance were predictors for providing open access to clinical samples and records.
Conclusion: The lack of public trust in Jordan toward data privacy is evident from this study. Therefore, a governance framework is needed to raise and maintain the public’s trust in big-data research that warrants the future reuse of clinical samples and records. As such, the current study provides valuable insights that will inform the design of effective consent protocols required in data-intensive health research.
Abstract: Background: Data sharing is an encouraged practice to support research in all fields. For that purpose, it is important to examine perceptions and concerns of researchers about biomedical data sharing, which was investigated in the current study.
Methods: This is a cross-sectional survey study that was distributed among biomedical researchers in Jordan, as an example of developing countries. The study survey consisted of questions about demographics and about respondent’s attitudes toward sharing of biomedical data.
Results: Among study participants, 46.9% (n=82) were positive regarding making their research data available to the public, whereas 53.1% refused the idea. The reasons for refusing to publicly share their data included “lack of regulations” (33.5%), “access to research data should be limited to the research team” (29.5%), “no place to deposit the data” (6.5%), and “lack of funding for data deposition” (6.0%). Agreement with the idea of making data available was associated with academic rank (P=0.003). Moreover, gender (P-value=0.043) and number of publications (P-value=0.005) were associated with a time frame for data sharing (ie, agreeing to share data before vs after publication).
Conclusion: About half of the respondents reported a positive attitude toward biomedical data sharing. Proper regulations and facilitation data deposition can enhance data sharing in Jordan.
“The Higher Council for Science and Technology (HCST) from Jordan is the first organisation in the Middle East to join cOAlition S.
HCST was established in 1987 as a public independent institution and acts as a national umbrella for all science & technology activities in Jordan. The objective of the Higher Council is to build a national science and technology base to contribute to the achievement of development goals, through increasing awareness of the significance of scientific research and development, granting the necessary funding and directing scientific and research activities, within national priorities, in line with development orientations.
cOAlition S is thrilled to welcome HCST as the latest member to the growing coalition and looks forward to collaborating with them in the coming months to realise its transformative Open Access plan….”
“Five partners from Europe and nine from South Mediterranean Countries are working together to widening participation and adoption of Open Educational Resources (OER) and Open Educational Practices (OEP) as a bottom-up approach to support the modernisation of the Higher Education sector in Morocco, Palestine, Egypt and Jordan….”
“UNESCO Amman Office on Wednesday celebrated the International Day for the Universal Access to Information (IDUAI) at the Jordan University for Science and Technology (JUST) in Irbid, a statement from the UN agency said.”
“Five partners from Europe and nine from South Mediterranean Countries are working together to widening participation and adoption of Open Educational Resources (OER) and Open Educational Practices (OEP) as a bottom-up approach to support the modernisation of the Higher Education sector in Morocco, Palestine, Egypt and Jordan.
OpenMed is an international cooperation project cofunded by the Erasmus+ Capacity Building in Higher Education programme of the European Union during the period 15 October 2015 – 14 October 2018.
It explores the adoption of strategies and channels that embrace the principles of openness and reusability within the context of South-Mediterranean universities.
The project will also offer the possibility to other universities from Morocco, Palestine, Egypt, Jordan or any other Southern Mediterranean country to join the action as community partners. Stay tuned to know more about the upcoming exciting Open Education adventures between the two shores of the Mediterranean basin! “