Challenges that face the establishment of diabetes biobank in Jordan: a qualitative analysis of an online discussion forum

References

• Greely HT. The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annu Rev Genom Hum Genet. 2007;8:343–364. doi:10.1146/annurev.genom.7.080505.115721
   PubMed Web of Science ®Google Scholar
• De Souza YG, Greenspan JS. Biobanking past, present and future: responsibilities and benefits. Aids. 2013;27(3):303–312. doi:10.1097/QAD.0b013e32835c124423135167
   PubMed Web of Science ®Google Scholar
• Ryu E, Takahashi PY, Olson JE, et al. Quantifying the importance of disease burden on perceived general health and depressive symptoms in patients within the Mayo Clinic Biobank. Health Qual Life Outcomes. 2015;13:95. doi:10.1186/s12955-015-0285-626138599
   PubMed Web of Science ®Google Scholar
• Watson PH, Barnes RO. A proposed schema for classifying human research biobanks. Biopreserv Biobank. 2011;9(4):327–333. doi:10.1089/bio.2011.002024836628
   PubMed Web of Science ®Google Scholar
• Budimir D, Polasek O, Marusic A, et al. Ethical aspects of human biobanks: a systematic review. Croat Med J. 2011;52(3):262–279.21674823
   PubMed Web of Science ®Google Scholar
• Hansson MG. Ethics and biobanks. Br J Cancer. 2009;100(1):8–12. doi:10.1038/sj.bjc.660479519034276
   PubMed Web of Science ®Google Scholar
• Alghadir A, Alghwiri AA, Awad H, Anwer S. Ten-year diabetes risk forecast in the capital of Jordan: Arab diabetes risk assessment questionnaire perspective-a strobe-complaint article. Medicine. 2016;95(12):e3181. doi:10.1097/MD.000000000000486427015209
   PubMed Web of Science ®Google Scholar
• Al-Nsour M, Zindah M, Belbeisi A, Hadaddin R, Brown DW, Walke H. Prevalence of selected chronic, noncommunicable disease risk factors in Jordan: results of the 2007 Jordan behavioral risk factor surveillance survey. Prev Chronic Dis. 2012;9:E25.22172192
   PubMed Web of Science ®Google Scholar
• Zindah M, Belbeisi A, Walke H, Mokdad AH. Obesity and diabetes in Jordan: findings from the behavioral risk factor surveillance system, 2004. Prev Chronic Dis. 2008;5(1):A17.18082006
   PubMedGoogle Scholar
• Tobin GA, Begley CM. Methodological rigour within a qualitative framework. J Adv Nurs. 2004;48(4):388–396. doi:10.1111/j.1365-2648.2004.03207.x15500533
   PubMed Web of Science ®Google Scholar
• Petersen ER, Nielsen AA, Christensen H, et al. Vejle Diabetes Biobank - a resource for studies of the etiologies of diabetes and its comorbidities. Clin Epidemiol. 2016;8:393–413. doi:10.2147/CLEP.S11341927799821
   PubMed Web of Science ®Google Scholar
• Van’t Riet E, Schram MT, Abbink EJ, et al. The diabetes pearl: diabetes biobanking in The Netherlands. BMC Public Health. 2012;12:949. doi:10.1186/1471-2458-12-94923130988
   PubMed Web of Science ®Google Scholar
• Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in biobank research. Am J Hum Genet. 2009;85(5):643–654. doi:10.1016/j.ajhg.2009.10.00219878915
   PubMed Web of Science ®Google Scholar
• Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genom. 2010;13(6):368–377. doi:10.1159/000276767
   PubMed Web of Science ®Google Scholar
• Knoppers BM, Zawati MH, Kirby ES. Sampling populations of humans across the world: ELSI issues. Annu Rev Genomics Hum Genet. 2012;13:395–413. doi:10.1146/annurev-genom-090711-16383422404491
   PubMed Web of Science ®Google Scholar
• Eriksson S, Helgesson G. Potential harms, anonymization, and the right to withdraw consent to biobank research. Eur J Hum Genet. 2005;13(9):1071–1076. doi:10.1038/sj.ejhg.520145815986039
   PubMed Web of Science ®Google Scholar
• Hallinan D, Friedewald M. Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation? Life Sci Soc Policy. 2015;11:1. doi:10.1186/s40504-014-0020-926085311
   PubMedGoogle Scholar
• Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N. The ethics of research using biobanks: reason to question the importance attributed to informed consent. Arch Intern Med. 2005;165(1):97–100. doi:10.1001/archinte.165.1.9715642883
   PubMedGoogle Scholar
• Ahram M, Othman A, Shahrouri M. Public support and consent preference for biomedical research and biobanking in Jordan. Eur J Hum Genet. 2013;21(5):567–570. doi:10.1038/ejhg.2012.21322968133
   PubMed Web of Science ®Google Scholar
• Moodley K, Sibanda N, February K, Rossouw T. “It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants. BMC Med Ethics. 2014;15:4. doi:10.1186/1472-6939-15-424447822
   PubMed Web of Science ®Google Scholar
• Beskow LM, Lin L, Dombeck CB, Gao E, Weinfurt KP. Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention. Gene Med. 2017;19(5):505–512. doi:10.1038/gim.2016.157
   PubMed Web of Science ®Google Scholar
• Bledsoe MJ. Ethical legal and social issues of biobanking: past, present, and future. Biopreserv Biobank. 2017;15(2):142–147. doi:10.1089/bio.2017.003028375760
   PubMed Web of Science ®Google Scholar
• Joly Y, Dalpe G, So D, Birko S. Fair shares and sharing fairly: a survey of public views on open science, informed consent and participatory research in biobanking. PLoS One. 2015;10(7):e0129893. doi:10.1371/journal.pone.012989326154134
   PubMed Web of Science ®Google Scholar
• Caulfield T, Burningham S, Joly Y, et al. A review of the key issues associated with the commercialization of biobanks. J Law Biosci. 2014;1(1):94–110. doi:10.1093/jlb/lst00427774156
   PubMed Web of Science ®Google Scholar
• Forsberg JS, Hansson MG, Eriksson S. Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results. Eur J Hum Genet. 2009;17(12):1544–1549. doi:10.1038/ejhg.2009.8719471310
   PubMed Web of Science ®Google Scholar
• Meulenkamp TM, Gevers SK, Bovenberg JA, Koppelman GH, van Hylckama Vlieg A, Smets EM. Communication of biobanks’ research results: what do (potential) participants want? Am J Med Genet. 2010;152A(10):2482–2492. doi:10.1002/ajmg.a.3361720799322
   PubMed Web of Science ®Google Scholar
• Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public expectations for return of results from large-cohort genetic research. Am J Bbioethics. 2008;8(11):36–43. doi:10.1080/15265160802513093
   PubMed Web of Science ®Google Scholar
• Al-Jumah MA, Abolfotouh MA. Public perception and attitude of saudis toward organ and tissue donation. Biopreserv Biobank. 2011;9(1):21–27. doi:10.1089/bio.2010.002524850202
   PubMed Web of Science ®Google Scholar
• Al Kuwari H, Al Thani A, Al Marri A, et al. The Qatar Biobank: background and methods. BMC Public Health. 2015;15:1208. doi:10.1186/s12889-015-2522-726635005
   PubMed Web of Science ®Google Scholar
• Macleod AK, Liewald DC, McGilchrist MM, Morris AD, Kerr SM, Porteous DJ. Some principles and practices of genetic biobanking studies. Eur Respir J. 2009;33(2):419–425. doi:10.1183/09031936.0004350819181915
   PubMed Web of Science ®Google Scholar
• Barr MP, Souan L, MacGabhann P, et al. The establishment of an ISO compliant cancer biobank for Jordan and its neighboring countries through knowledge transfer and training. Biopreserv Biobank. 2014;12(1):3–12. doi:10.1089/bio.2013.007224620764
   PubMed Web of Science ®Google Scholar