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

BMC Medical Ethics

Research

Manal Shahouri¹  Nada Taha Mostafa²  Fatma Abdelgawad³  Alya Elgamri⁴  Ehsan Gamel⁵  Karima El-Rhazi⁶  Zeinab Mohammed⁷  Latifa Adarmouch⁸  Eman Elsebaie⁹  Maha Emad Ibrahim^1,10  Samar Abd ElHafeez^1,11  Ahmed Samir Abdelhafiz^1,12  Mamoun Ahram^1,13  Henry Silverman^1,14 

[1] Amman, Jordan;Cairo, Egypt;Faculty of Dentistry, Cairo University, Cairo, Egypt;Faculty of Dentistry, University of Khartoum, Cairo, Egypt;Faculty of Dentistry, University of Khartoum, Khartoum, Sudan;Faculty of Medicine of Fez, Sidi Mohamed Ben Abellah University, Fez, Morocco;Faculty of Medicine, Beni-Suef University, Beni Suef, Egypt;Faculty of Medicine, Cadi Ayyad University, Marrakesh, Morocco;Faculty of Medicine, Cairo University, Cairo, Egypt;Faculty of Medicine, Suez Canal University, Ismailia, Egypt;High Institute of Public Health, Alexandria University, Alexandria, Egypt;National Cancer Institute, Cairo University, Cairo, Egypt;School of Medicine, The University of Jordan, Amman, Jordan;University of Maryland School of Medicine, Baltimore, MD, USA;

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

DOI  :  10.1186/s12910-022-00855-z

 received in 2022-04-17, accepted in 2022-11-04,  发布年份 2022

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s) 2022

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