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. 2022 Dec 1;23(1):122.
doi: 10.1186/s12910-022-00855-z.

Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research

Mamoun Ahram  1 , Fatma Abdelgawad  2 , Samar Abd ElHafeez  3 , Ahmed Samir Abdelhafiz  4 , Maha Emad Ibrahim  5 , Alya Elgamri  6 , Zeinab Mohammed  7 , Karima El-Rhazi  8 , Eman Elsebaie  9 , Ehsan Gamel  10 , Manal Shahouri  11 , Nada Taha Mostafa  12 , Latifa Adarmouch  13 , Henry Silverman  14
Affiliations

Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research

Mamoun Ahram et al. BMC Med Ethics. .

Abstract

Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data from diverse segments of the population have made such research possible. However, the success of biobank research depends on the willingness of the public to participate in this type of research. We aimed to explore the factors associated with the willingness of the public to participate in biobank research from four low- and middle-income countries in the Arab region (Egypt, Jordan, Morocco, and Sudan). We used a previously validated questionnaire to assess several constructs that included the public's perceptions, attitudes, and willingness to participate in biobank research. We recruited 967 participants. More than half did not have prior awareness of biobanks. Participants' willingness to donate biospecimens and health data was less than 10%. Our results also showed that participants harbored concerns with trust, privacy, and with data-sharing involving international researchers. Predictors of willingness to participate in biobank research included no previous involvement in research and positive attitudes toward biobanks. Finally, our study showed several differences between the four countries regarding several of the investigated constructs. We conclude there should be additional efforts to raise public awareness and enhance perceptions of the public in biobanking research to enhance trust. We further recommend qualitative research to explore the underlying factors that contribute to the public's concerns with international data sharing that would enhance global health.

Keywords: Arab countries; Attitudes; Biobanks; Data sharing; Genomic research; Perceptions; Privacy; Public; Return of individual research results; Trust.

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Conflict of interest statement

All authors declare that they have no financial or non-financial competing interests.

Figures

Fig. 1
Fig. 1
Participants’ preferences towards types of informed consent (agree + strongly agree). (n = 967)
See this image and copyright information in PMC

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