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

被引:12
作者
Ahram, Mamoun [1 ]
Abdelgawad, Fatma [2 ]
Abd ElHafeez, Samar [3 ]
Abdelhafiz, Ahmed Samir [4 ]
Ibrahim, Maha Emad [5 ]
Elgamri, Alya [6 ]
Mohammed, Zeinab [7 ]
El-Rhazi, Karima [8 ]
Elsebaie, Eman [9 ]
Gamel, Ehsan [10 ]
Shahouri, Manal [11 ]
Mostafa, Nada Taha [12 ]
Adarmouch, Latifa [11 ]
Silverman, Henry [12 ]
机构
[1] Univ Jordan, Sch Med, Amman, Jordan
[2] Cairo Univ, Fac Dent, Cairo, Egypt
[3] Alexandria Univ, High Inst Publ Hlth, Alexandria, Egypt
[4] Cairo Univ, NCI, Cairo, Egypt
[5] Suez Canal Univ, Fac Med, Ismailia, Egypt
[6] Univ Khartoum, Fac Dent, Cairo, Egypt
[7] Beni Suef Univ, Fac Med, Bani Suwayf, Egypt
[8] Sidi Mohamed Ben Abellah Univ, Fac Med Fez, Fes, Morocco
[9] Cairo Univ, Fac Med, Cairo, Egypt
[10] Univ Khartoum, Fac Dent, Khartoum, Sudan
[11] Cadi Ayyad Univ, Fac Med, Marrakech, Morocco
[12] Univ Maryland, Sch Med, Baltimore, MD 21201 USA
基金
美国国家卫生研究院;
关键词
Biobanks; Arab countries; Public; Perceptions; Attitudes; Data sharing; Genomic research; Return of individual research results; Trust; Privacy; BROAD CONSENT; GENOMIC DATA; PERSPECTIVES; SAMPLES; TRUST;
D O I
10.1186/s12910-022-00855-z
中图分类号
B82 [伦理学(道德学)];
学科分类号
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.
引用
收藏
页数:18
相关论文
共 59 条
[1]   The use of human biospecimens for research [J].
Aaron, Roy ;
Aaron, David ;
Racine-Avila, Jennifer ;
Menikoff, Jerry .
JOURNAL OF ORTHOPAEDIC RESEARCH, 2021, 39 (08) :1603-1610
[2]   Development and Validation of a Biobank Questionnaire Intended for the Public in the Arab Region [J].
Abd ElHafeez, Samar ;
Ahram, Mamoun ;
Abdelhafiz, Ahmed Samir ;
Ibrahim, Maha Emad ;
Mostafa, Nada Taha ;
Elgamri, Alya ;
Mohammed, Zeinab ;
Abdelgawad, Fatma ;
Elsebaie, Eman ;
Gamel, Ehsan ;
Shahouri, Manal ;
Adarmouch, Latifa ;
El Rhazi, Karima ;
Silverman, Henry .
BIOPRESERVATION AND BIOBANKING, 2021, 19 (05) :422-431
[3]   What Egyptians think. Knowledge, attitude, and opinions of Egyptian patients towards biobanking issues [J].
Abdelhafiz, Ahmed S. ;
Sultan, Eman A. ;
Ziady, Hany H. ;
Ahmed, Ebtesam ;
Khairy, Walaa A. ;
Sayed, Douaa M. ;
Zaki, Rana ;
Fouda, Merhan A. ;
Labib, Rania M. .
BMC MEDICAL ETHICS, 2019, 20 (01)
[4]   Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions [J].
Abdelhamid, Mohamed ;
Gaia, Joana ;
Sanders, G. Lawrence .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2017, 19 (09)
[5]   Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey [J].
Abou-Zeid, Alaa ;
Silverman, Henry ;
Shehata, Magdi ;
Shams, Mohamed ;
Elshabrawy, Mervat ;
Hifnawy, Tamer ;
Rahman, Safa Abdel ;
Galal, Bahiga ;
Sleem, Hany ;
Mikhail, Nabiel ;
Moharram, Nadia .
JOURNAL OF MEDICAL ETHICS, 2010, 36 (09) :539-547
[6]   Towards establishing a multiple sclerosis biobank in Jordan [J].
Ahram, Mamoun ;
Zaza, Rand ;
Ibayyan, Leena ;
Dahbour, Said ;
Bahou, Yacoub ;
El-Omar, Ammar ;
Samhouri, Bilal ;
El-Khateeb, Mohammad .
INTERNATIONAL JOURNAL OF NEUROSCIENCE, 2014, 124 (11) :812-817
[7]   Factors influencing public participation in biobanking [J].
Ahram, Mamoun ;
Othman, Areej ;
Shahrouri, Manal ;
Mustafa, Ebtihal .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2014, 22 (04) :445-451
[8]   Public support and consent preference for biomedical research and biobanking in Jordan [J].
Ahram, Mamoun ;
Othman, Areej ;
Shahrouri, Manal .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2013, 21 (05) :567-570
[9]   Public Perception Towards Biobanking in Jordan [J].
Ahram, Mamoun ;
Othman, Areej ;
Shahrouri, Manal .
BIOPRESERVATION AND BIOBANKING, 2012, 10 (04) :361-365
[10]   PREDICTION OF BEHAVIORAL INTENTIONS IN A CHOICE SITUATION [J].
AJZEN, I ;
FISHBEIN, M .
JOURNAL OF EXPERIMENTAL SOCIAL PSYCHOLOGY, 1969, 5 (04) :400-&