The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank ResearchCritchley C.a, b · Nicol D.c · Otlowski M.c
Departments of aPsychological Sciences and bStatistics, Data Science and Epidemiology, Faculty of Health, Arts and Design, Swinburne University of Technology, Hawthorn, Vic., and cCentre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, Tas., Australia
Do you have an account?
- Rent for 48h to view
- Buy Cloud Access for unlimited viewing via different devices
- Synchronizing in the ReadCube Cloud
- Printing and saving restrictions apply
Rental: USD 8.50
Cloud: USD 20.00
Article / Publication Details
Objectives: The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party access (public vs. private) on public trust and, in turn, the intention to participate in biobank research. Methods: An experimental design was used to assess a national sample of 1,701 Australians via a computer-assisted telephone interview. Results: The results revealed that trust and the intention to participate significantly decreased in relation to private compared to public biobanks, and when access to third-party researchers was allowed compared to when it was not. Somewhat surprisingly, no differences were found in relation to the third party being international compared to Australian, but trust and the intention to participate were significantly eroded when private third parties were allowed access. Those with a university education were particularly distrustful of private biobanks and biobanks that allowed access, while those who were more aware of genetic databases appeared more confident with biobanks sharing with private-sector third parties. Conclusion: The pattern of results suggests that public awareness of the need for biobanks to share their resources widely needs to be increased to maintain public trust and support.
© 2015 S. Karger AG, Basel
- Watson RWG, Kay EW, Smith D: Integrating biobanks: addressing the practical and ethical issues to deliver a valuable tool for cancer research. Nat Rev Cancer 2010;10:646-651.
- Knoppers BM, Harris JR, Tassé A, Budin-Ljøsne I, Kaye J, Deschênes M, Zawati MH: Towards a data sharing Code of Conduct for international genomic research. Genome Med 2011;3:1-4.
- Hewitt RE: Biobanking: the foundation of personalized medicine. Curr Opin Oncol 2011;23:112-119.
- Cadigan RJ, Lassiter D, Haldeman K, Conlon I, Reavely E, Henderson GE: Neglected ethical issues in biobank management: results from a US study. Life Sci Soc Policy 2013;9:1.
- Caulfield T, Burningham S, Joly Y, Master Z, Shabani M, Borry P, Becker A, Burgess M, Calder K, Critchley C, Edwards K, Fullerton SM, Gottweis H, Hyde-Lay R, Illes J, Isasi R, Kato K, Kaye J, Knoppers B, Lynch J, McGuire A, Meslin E, Nicol D, O'Doherty K, Ogbogu U, Otlowski M, Pullman D, Ries N, Scott C, Sears M, Wallace H, Zawati MH: A review of the key issues associated with the commercialization of biobanks. J Law Biosci 2014;1:94-110.
- Caulfield T, Borry P, Gottweis H: Industry involvement in publicly funded biobanks. Nat Rev Gen 2014;5:220.
- Tutton R, Kaye J, Hoeyer K: Governing UK Biobank: the importance of ensuring public trust. Trends Biotechnol 2004;22:284-285.
- Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer-Edwards K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN, Sugarman J, Timmons M: Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol 2008;6:430-435.
- Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL: Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009;85:643-654.
- McGuire AL, Hamilton JA, Lunstroth R, McCullough LB, Goldman A: DNA data sharing: research participants' perspectives. Genet Med 2008;10:46-53.
- Bryant RJ, Harrison RF, Start RD, Chetwood AS, Chesshire AM, Reed MW: Cross ownership and uses of human tissue: what are the opinions of surgical in-patients. J Clin Pathol 2008;61:322-326.
- Nilstun T, Hermerén G: Human tissue samples and ethics - attitudes of the general public in Sweden to biobank research. Med Health Care Philos 2006;9:81-86.
- Caulfield T, Rachul C, Nelson E: Biobanking, consent, and control: a survey of Albertans on key research ethics issues. Biopreserv Biobank 2012;10:433-438.
- Levitt M, Weldon S: A well placed trust? Public perceptions of the governance of DNA databases. Crit Public Health 2005;15:311-321.
- McGuire AL, Oliver JM, Slashinski MJ, Graves JL, Wang T, Kelly PA, Fisher W, Lau CC, Goss J, Okcu M, Treadwell-Deering D, Goldman AM, Noebels JL, Hilsenbeck SG: To share or not to share: a randomized trial of consent for data sharing in genome research. Genet Med 2011;13:948-955.
- Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W: Genomic research and wide data sharing: views of prospective participants. Genet Med 2010;12:486-495.
- Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME: Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010;13:368-377.
- Miller FA, Painter-Main M, Axler R, Lehoux P, Giacomini M, Slater B: Citizen expectations of ‘academic entrepreneurship' in health research: public science, practical benefit. Health Expect 2014, Epub ahead of print.
- Master Z, Claudio JO, Rachul C, Wang JCY, Minden MD, Caulfield T: Cancer patient perceptions on the ethical and legal issues related to biobanking. BMC Med Genomics 2013;6:8-18.
- Critchley C: Public opinion and trust in scientists: the role of the research context, and the perceived motivation of stem cell researchers. Public Underst Sci 2008;17:309-327.
- Critchley CR, Nicol D: Understanding the impact of commercialization on public support for science: is it about the funding source or the organization conducting research. Public Underst Sci 2011;20:347-366.
American Association for Public Opinion Research: Standard Definitions: Final Dispositions of Case Codes and Outcome Rates for Surveys, ed 7. Lenexa, American Association for Public Opinion Research, 2011. http://aapor.org/Content/NavigationMenu/AboutAAPOR/StandardsampEthics/StandardDefinitions/StandardDefinitions2011.pdf (accessed August 8, 2014).
- Little RJA: Post-stratification: a modeler's perspective. J Am Statist Assoc 1993;88:1001-1012.
Australian Bureau of Statistics: Population by age and sex, regions of Australia, 2011 (cat. No. 3235.0). http://www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/3235. 02011?OpenDocument (accessed November 25, 2014).
Tabachnick BG, Fidell LS: Using Multivariate Statistics, ed 6. New York, Allyn & Bacon, 2012.
- Yuan KH, Bentler PM: Three likelihood-based methods for mean and covariance structure analysis with non-normal missing data. Sociol Methodol 2000;30:165-200.
- Rubin DB: Multiple Imputation for Nonresponse in Surveys. New York, John Wiley & Sons, 1989.
Schafer JL: Analysis of Incomplete Multivariate Data. London, Chapman & Hall, 1997.
- Meijer I, Molas-Gallart J, Mattsson P: Networked research infrastructures and their governance: the case of biobanking. Sci Public Pol 2012;39:491-499.
Fleming J: Issues with tissues: perspective of tissue bank donors and the public towards biobanks and related genetic research; in Stranger ME (ed): Human Biotechnology and Public Trust: Trends, Perceptions and Regulation. Hobart, Centre for Law and Genetics, Uni Tas, 2007, pp 184-201.
- Kettis-Lindblad A, Ring L, Viberth E, Hansson MG: Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur J Public Health 2005;16:433.
- Critchley CR, Nicol D, Otlowski MF, Stranger M: Predicting intention to biobank: a national survey. Eur J Public Health 2012;22:139-144.
- Page MPA, Norris D: The primacy model: a new model of immediate serial recall. Psychol Rev 1998;105:761-781.
Article / Publication Details
Copyright / Drug Dosage / DisclaimerCopyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.