80
Views
6
CrossRef citations to date
0
Altmetric
Original Research

Jordanians’ Perspectives On Open Consent In Biomedical Research

ORCID Icon, , ORCID Icon & ORCID Icon
Pages 265-273 | Published online: 02 Dec 2019

References

  • Iltis A. Lay concepts in informed consent to biomedical research: the capacity to understand and appreciate risk. Bioethics. 2006;20(4):180–190. doi:10.1111/biot.2006.20.issue-417044151
  • Townsend D. Informed consent in biomedical research. Conf Proc IEEE Eng Med Biol Soc. 2006;1:4085–4087.17945825
  • 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
  • Dhai A, Mahomed S. Biobank research: time for discussion and debate. S Afr Med J. 2013;103(4):225–227. doi:10.7196/SAMJ.681323547695
  • Master Z, Nelson E, Murdoch B, Caulfield T. Biobanks, consent and claims of consensus. Nat Methods. 2012;9(9):885–888. doi:10.1038/nmeth.214222936169
  • Abou-Zeid A, Silverman H, Shehata M, et al. Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey. J Med Ethics. 2010;36(9):539–547. doi:10.1136/jme.2009.03310020663757
  • Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 2006;7(3):266–269. doi:10.1016/S1470-2045(06)70618-016510336
  • 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
  • Husedzinovic A, Ose D, Schickhardt C, Frohling S, Winkler EC. Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature. Eur J Hum Genet. 2015;23(12):1607–1614. doi:10.1038/ejhg.2015.2725735479
  • Sanderson SC, Brothers KB, Mercaldo ND, et al. Public attitudes toward consent and data sharing in biobank research: a large multi-site experimental survey in the US. Am J Hum Genet. 2017;100(3):414–427. doi:10.1016/j.ajhg.2017.01.02128190457
  • 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
  • Grady C, Eckstein L, Berkman B, et al. Broad consent for research with biological samples: workshop conclusions. Am J Bioethics. 2015;15(9):34–42. doi:10.1080/15265161.2015.1062162
  • Makhlouf H, Alrabadi N, Khabour OF, Alzoubi KH, Al-Delaimy W. Population’s perspectives toward biobanks in scientific research: a study from Jordan. Pharmacogenomics Pers Med. 2019;12:23–32. doi:10.2147/PGPM.S187657
  • Winickoff DE, Winickoff RN. The charitable trust as a model for genomic biobanks. N Engl J Med. 2003;349(12):1180–1184. doi:10.1056/NEJMsb03003613679534
  • Hansson MG. Building on relationships of trust in biobank research. J Med Ethics. 2005;31(7):415–418. doi:10.1136/jme.2004.00945615994363
  • Beskow LM, Dean E. Informed consent for biorepositories: assessing prospective participants’ understanding and opinions. Cancer Epidemiol Biomarkers Prev. 2008;17(6):1440–1451. doi:10.1158/1055-9965.EPI-08-008618559560
  • Ahram M, Othman A, Shahrouri M. Public perception towards biobanking in Jordan. Biopreserv Biobank. 2012;10(4):361–365. doi:10.1089/bio.2012.001024849885
  • Trauth JM, Musa D, Siminoff L, Jewell IK, Ricci E. Public attitudes regarding willingness to participate in medical research studies. J Health Soc Policy. 2000;12(2):23–43. doi:10.1300/J045v12n02_0211184441
  • Riordan F, Papoutsi C, Reed JE, Marston C, Bell D, Majeed A. Patient and public attitudes towards informed consent models and levels of awareness of electronic health records in the UK. Int J Med Inform. 2015;84(4):237–247. doi:10.1016/j.ijmedinf.2015.01.00825649841
  • Asai A, Ohnishi M, Nishigaki E, Sekimoto M, Fukuhara S, Fukui T. Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: preliminary findings based on focus group interviews. BMC Med Ethics. 2002;3:E1. doi:10.1186/1472-6939-3-111825345
  • 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