Sharing, reuse, and storage of biosamples among biomedical researchers in Jordan: Practice and concerns.

BACKGROUND: Sharing and reuse biosamples can facilitate biomedical research. Little is known about researchers' perception and practice about sharing, reusing, and storing biosamples in Jordan. Therefore, the current study aimed to evaluate the practices of biomedical researchers in Jordan regarding biosamples management. METHODS: The study was cross-sectional and involved biomedical researchers from different parts of Jordan. A questionnaire was designed to achieve the aim of this study. The questionnaire was web-based and distributed via e-mails using Google forms. RESULTS: Opinions of Jordanian biomedical researchers from different academic ranks and institutional backgrounds were measured and recorded anonymously. The majority of the sample was males (57.9%), from public universities (64.3%), and (64.6%) were from health-related fields. About 82.9% of participants stored biosamples using codes, whereas the rest used the subject's name. Sharing of biosamples was commonly practiced by 61.7% of Jordanian researchers locally, while 47.2% of the Jordanian researchers shared biosamples overseas. The reuse of biosamples in other projects was reported to be 55.4%. The majority explained the possibility of reusing and sharing biosamples in the consent form (range: 53-58%). Sharing and reusing biosamples were associated with gender, the number of publications in peer-reviewed international journals, and academic rank (P<0.05). CONCLUSION: Sharing and reusing biosamples are common among Jordanian biomedical researchers. Therefore, ethically grounded biosamples sharing and reuse standards are essential for protecting human subjects' rights and privacy in Jordan.

Ethical issues in bio-sample sharing among the public in Jordan.

BACKGROUND: Among the challenges of health research are sharing and the future use of human biological samples. Usually, participants show different opinions and ethical concerns regarding the usage and sharing of their biological samples. In this study, we investigated the perspectives of Jordanian participants regarding bio-samples collection, storage, use, and sharing. METHODS: The study is cross sectional, questionnaire-based, and involved 248 participants from Jordan. Data collected included demographic, qualitative, and quantitative information from research participants. The questionnaire was accomplished in the Arabic language and data were analyzed using SPSS version 22.0. RESULTS: Most of the participants (77%) supported providing samples for research purposes. Yet, they expressed concerns about the future use of their samples (27.8%), storage of their bio-samples after first use (19%), and export of the bio-samples outside of the country (27%). They further indicated that they will not mind if profits are generated from the samples (36.7%). On the other hand, about 18.5% would be very unhappy and would sue the researchers if their bio-samples were reused without their consent. CONCLUSIONS AND RECOMMENDATION: Participants showed strong views on specimen collection, storage, export, benefit sharing and future usage - most significantly on the consent process that permits free choices. Further research should be conducted to explore the concept of bio-samples donation and the benefit of sharing among researchers in Jordan.

Informed Consent Form Challenges for Genetic Research in Jordan.

BACKGROUND: Informed consent is an obligatory requirement for research engaging human subjects. Informed consent form (ICF) should be provided for human subjects to confirm their willingness for voluntary participation in a study. Ethical and legal obligations necessitate the presence of informed consent essential items to be built into the ICF. OBJECTIVE: To evaluate the content of ICFs obtained from different genetic studies accomplished in Jordan and their adherence to ethical guidelines proposed by the International Conference on Harmonization-Good Clinical Practice (ICHGCP). METHODS AND MEASURES: A total of 44 ICFs obtained from master theses and grant proposals at two major universities in Jordan were analyzed according to the good clinical practice criteria proposed by ICHGCP. ICFs were scored for the presence or absence of ICF main items/categories. RESULTS: Results show inadequate information present in the examined ICFs. The highest information score was 17 out of 20, while the lowest score was one out of 20. The average score for all studied ICFs was 6.18±3.65. Among essential items/categories that were absent from the majority of studied ICFs were a statement about voluntary participation, confidentiality of data, compensation to study participants, risk/benefits of the study, and researchers' contact information. CONCLUSION: The ICFs were missing a number of required items. This could reflect inadequate knowledge about minimal informed consent requirements among Jordanian investigators highlighting the need for research ethical training in the country.