The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Mohammadi Begum Khan, Faizan Ahmed Khan, Veena Vaswani, Uma Kulkarni, Parvathy Ram Mohan

Abstract


Background: The term "Biobank" has been used in different ways but one way is to define it as "an organized collection of human biological material and associated information stored for one or more research purposes". By definition, "Biobank" is a long-term storage and conservation facility for biological specimens, to support future scientific investigation. The aim of this study is to assess the awareness and perception of Biobanks, their existence, aims and objectives and the ethical concerns related to them, among the clinicians pertaining to both medical and dental specialties.

Methods: A questionnaire comprising of 31 questions of which few are purely awareness and rest are perception based is framed. The questions which were framed for the questionnaire, have few of them given direct responses as YES, NO, DON'T KNOW and the remaining of them have been graded into LIKERT'S SCALE, ranging from 1 to 5. Statistical analysis: After obtaining the response, the answers were plotted in MS-Excel sheet and analysed statistically for the Percentages, Frequencies, Chi-square and degree of Association (p>0.05= No Association) between the two fraternities responses by using SPSS 22.0 version software. The p value was set at 0.05

Result: There was found a level of association between both the groups for certain sensitive questions relating to privacy of information and ownership claims.

Conclusion: It can be concluded that the willingness to participate in sample donation, motivation for sample donation are in agreement with each other, which is worth being further investigated.

 

DOI: 10.21276/AABS.1400


Keywords


biobanks, awareness, ethical issues, informed consent, clinical practitioners

Full Text:

PDF

References


Greely, H. T. “The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic

Biobanks”. Annual Review of Genomics and Human Genetics. 2007; 8: 343–364.

Artene S A, Ciurea ME, Purcaru S O, Tache DE. Biobanking in a Constantly Developing Medical World ; The ScientificWorld Journal 2013.

Hewitt, R. E. “Biobanking: The foundation of personalized medicine”. Current Opinion in Oncology. 2011; 23 (1): 112–119.

Fullerton, S. M.; Anderson, N. R.; Guzauskas, G.; Freeman, D.; Fryer-Edwards, K. “Meeting the Governance Challenges of Next-Generation Biorepository Research”. Science Translational Medicine. 2010; 2: (15)

Cambon-Thomsen, A.; Rial-Sebbag, E.; Knoppers, B. M. “Trends in ethical and legal frameworks for the use of human biobanks”. European Respiratory Journal. 2007; 30 (2): 373–382.

Haga, S.; Beskow, L. “Ethical, Legal, and Social Implications of Biobanks for Genetics Research”. Genetic Dissection of Complex Traits. Advances in Genetics. 2008; 60: 505–544

Gaskell G, Gottweis H, Starkbaum J et al: Publics and biobanks: Pan-European diversity and the challenge of responsible innovation. Eur J Hum Genet 2013; 21: 14–20.

Hoeyer K. Trading in Cold Blood? Trust in Biobanking 2012; 21-41.

Hens K, Nys H, Cassiman JJ, Dierickx K. Genetic research on stored tissue samples from minors: a systematic review of the ethical literature. Am J Med Genet A. 2009;149A: 2346-58.

Tupasela A, Sihvo S, Snell K, Jallinoja P, Aro AR, Hemminki E: Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. Scand J Public Health 2010; 38: 46–5

Beskow LM, Dean E: Informed consent for biorepositories: assessing prospective participants’ understanding and opinions. Cancer Epidemiol Biomarkers Prev 2008; 17: 1440–1451.

Ahmad M, Al Gamal E, Othman A, Nasrallah E: Knowledge, attitudes and practices

towards cancer prevention and care in Jordan. Report 2011.

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: 21-27.

Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM: Computerization of Medical Practices for the Enhancement of Therapeutic Effectiveness investigators. Patients’ consent preferences for research uses of information in electronic medical records: interview and survey data. BMJ 2003; 326: 31.

Hansson MG. The need to downregulate: A minimal ethical framework for Biobank research. Methods Mol Biol. 2011;675:39-59.

Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in Biobank research. Am J Hum Genet. 2009;85:643-54.

Cambon-Thomsen A. The social and ethical issues of post-genomic human Biobanks. Nat Rev Genet.2004;5:866-73

Rothstein MA. Expanding the ethical analysis of Biobanks. J Law Med Ethics. 2005;33:89-101.

. Chalmers D. Genetic research and Biobanks. Methods Mol Biol. 2011; 675:1-37.

Nwabueze, Remigius Nnamdi . Biotechnology and the Challenge of Property: Property Rights in Dead Bodies. Aldershot, England: Ashgate Press 2007; 169– 170.


Refbacks

  • There are currently no refbacks.


Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.