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1. Title Title of document Biobanking in the subcontinent: exploring concerns
2. Creator Author's name, affiliation, country Aamir M Jafarey; Centre of Biomedical Ethics and Culture, Sindh Institute of Urology and Transplantation, Karachi, Pakistan
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4. Description Abstract

Biobanking is an important tool for biomedical research. However, it raises a variety of ethical issues, which are compounded in the developing world. This paper is based on data from three sources on the ethical issues associated with biobanking, including a mixed method pilot study conducted with students in Karachi, Pakistan, a workshop in Karachi, and another workshop held in Bengaluru, India.

Findings from these sources reveal a unanimous lack of clarity about what constitutes a biobank. While informed consent was deemed necessary for storage of materials, participants were unsure of how this could be achieved for samples stored indefinitely for future research. Although study participants showed limited understanding of genetic research, concerns were raised in the Karachi workshop. A majority of survey participants found it acceptable to transfer biospecimens across borders, but possibility of misuse was highlighted in both workshops. This paper reveals ambiguities with respect to ethical challenges of biobanking, indicating the need for further discourse.

5. Publisher Organizing agency, location Forum for Medical Ethics Society
6. Contributor Sponsor(s)
7. Date (YYYY-MM-DD) 2017-07-11
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9. Format File format HTML , PDF
10. Identifier Uniform Resource Identifier http://www.issuesinmedicalethics.org/articles/biobanking-in-the-subcontinent-exploring-concerns/
11. Source Title; vol., no. (year) Indian Journal of Medical Ethics;: The right to life
12. Language English=en en
13. Relation Supp. Files
14. Coverage Geo-spatial location, chronological period, research sample (gender, age, etc.)
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