Towards establishing a multiple sclerosis biobank in Jordan

Ahram, Mamoun; Zaza, Rand; Ibayyan, Leena; Dahbour, Said; Bahou, Yacoub; El-Omar, Ammar; Samhouri, Bilal F.; El-Khateeb, Mohammad

doi:10.3109/00207454.2014.886204

Cited by 9 publications

(8 citation statements)

References 29 publications

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“…In a previous population-based study conducted in Jordan, the majority of respondents (75%) favored broad consent and only 4% preferred re-consenting for every study [ 21 ]. This was contrary to the findings of another study that reported that only half of the patients with multiple sclerosis preferred broad consent and 37% would prefer to be re-consented [ 22 ]. It is tempting to argue that the high preference for re-consenting and re-contacting is due to the eagerness to learn of the type of research to be conducted on participants’ biospecimens.…”

Section: Discussioncontrasting

confidence: 97%

Views of university students in Jordan towards Biobanking

et al. 2021

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Background Biobanks are considered primary means+ of supporting contemporary research, in order to deliver personalized and precise diagnostics with public acceptance and participation as a cornerstone for their success. Aims This study aims to assess knowledge, perception, and attitudes towards biomedical research and biobanking among students at the University of Jordan. Methodology An online questionnaire was designed, developed, and piloted. It was divided into 5 sections that included questions related to issues of biomedical research and biobanking as well as factors influencing the decision to participate. Results Responses from 435 students revealed that 52.9% previously heard of biobanks. There was an overwhelming acceptance for participation in biomedical, genetic, and biobanking research. A blood sample was the most preferred for donation. Protection of privacy, informed consent prior to donation, approval of an ethics committee, and trust towards researchers were the most important factors associated with willingness to participate. On the other hand, the vagueness of the type of research performed on the biospecimens and the unavailability of general research results to the donor had a negative connotation. There was no clear agreement on the type of informed consent preferred by students, but to be contacted and informed of research results was preferred by the majority. Students also preferred the disposal of biospecimens and information when deciding to withdraw from participation. Conclusion There is strong enthusiasm among students to participate in biomedical research and biobanking with all rights reserved thus providing hope for a very promising future in Jordan.

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Section: Discussioncontrasting

confidence: 97%

Views of university students in Jordan towards Biobanking

et al. 2021

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“…This may also reflect differences in studies’ designs among different research groups. In Jordan, perspectives toward donating bio-specimens for biobanks were previously reported among multiple sclerosis and dental patients 27,28. Only one study has previously targeted the Jordanian general population 29,30.…”

Section: Discussionmentioning

confidence: 99%

<p>Population’s perspectives toward biobanks in scientific research: a study from Jordan</p>

Makhlouf

Alrabadi

Khabour

et al. 2019

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BackgroundBiobanks (biorepositories) were established to compile collected bio-specimens for future research and usage. The collection/storage of bio-specimens triggers several social, legal, and ethical implications where public attitudes can represent the core measurement/parameter in defining the most acceptable practices and ethical approaches when dealing with biobanks.AimThe aim of this study was to explore and understand population’s perspectives, expectations, and concerns toward biobanks in Jordan.MethodsA cross-sectional survey that included closed-ended questions was distributed among Jordanians. A total of 500 participants who are representative of the Jordanian population were included in this study.ResultsThere was overwhelming support (>85%) for the establishment of biobanks in Jordan, and most of the participants agreed on the importance of biobanks and samples’ donation for promoting medical research. Enthusiasm in biobanking participation was associated with the sociodemographic characteristics of participants including age, educational level, and previous knowledge of biobanks. Moreover, considering sample donation as a religiously good deed appeared to have the strongest positive correlation with willingness to donate bio-specimens for future research. Also, participants’ trust in medical and research services, especially the protection of their privacy and confidentiality, was the most critical concern when they decided to participate in biobanks.ConclusionPopulation’s attitude toward biobanks in Jordan was positive and promising, and can encourage the future establishment of different biobanks. It is also necessary to take into consideration certain sociodemographic characteristics when discussing specific information with potential biobanks’ donors.

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“…9 Many factors were found to be associated with willingness to donate, such as age, gender, education, residence, religion, biobanking knowledge score, family history of disease, trust in the health care system, and history of blood or tissue donation. 2,[9][10][11][12][13][14][15][16][17][18][19][20][21][22][23] In addition, willingness to donate varies according to country and culture.…”

Section: Introductionmentioning

confidence: 99%

Patients' Knowledge and Attitude Toward Biobanks in Eastern Morocco

Lhousni

Daoudi

Belmokhtar

et al. 2020

Biopreservation and Biobanking

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Background: To integrate biobanks into the Moroccan health system and to promote biobanks-based research projects, it is necessary to explore the knowledge of patients, their attitudes toward biobanks, and the reasons that motivate them to participate in biobanks. Methods: Face-to-face interviews were conducted with patients, and data were analyzed using SPSS.Results: One thousand one hundred thirty-three questionnaires were completed. The mean age of patients was 47.74 years (SD 15.26 years). More women (69%) were involved in this survey. Of the respondents, 97% had never heard of the term ''biobanks.'' Knowledge of biobanks varied significantly with respondents' education level. Overall, 80.7% of the participants (n = 914) expressed their willingness to participate in biobanking through donation of biospecimens associated with personnel and health data. Willingness to participate in biobanks was significantly associated with gender and age. We found that the main barriers to participation in biobanks were the lack of trust in biomedical research and concerns about privacy. When asked about the preferred type of consent, the majority of patients (75%) opted for a one-time consent. Conclusion: Despite the lack of knowledge of biobanks among patients in Eastern Morocco, the majority of them expressed willingness to participate in biobanking through donation of biospecimens. However, active participation depended upon a number of factors, notably, the trust in biomedical research and privacy. Therefore, more efforts are needed to increase awareness and promote wider participation in biobanking.

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Towards establishing a multiple sclerosis biobank in Jordan

Cited by 9 publications

References 29 publications

Views of university students in Jordan towards Biobanking

Views of university students in Jordan towards Biobanking

<p>Population’s perspectives toward biobanks in scientific research: a study from Jordan</p>

Patients' Knowledge and Attitude Toward Biobanks in Eastern Morocco

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Towards establishing a multiple sclerosis biobank in Jordan

Cited by 9 publications

References 29 publications

Views of university students in Jordan towards Biobanking

Views of university students in Jordan towards Biobanking

<p>Population&rsquo;s perspectives toward biobanks in scientific research: a study from Jordan</p>

Patients' Knowledge and Attitude Toward Biobanks in Eastern Morocco

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<p>Population’s perspectives toward biobanks in scientific research: a study from Jordan</p>