Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia

Internal Medicine Journal

Volumn 45, Issue 12, 2015, Pages 1274-1279

  Fleming, J ^a   Critchley, C ^c   Otlowski, M ^d   Stewart, C ^b   Kerridge, I ^a  

^a UNIVERSITY OF SYDNEY   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c SWINBURNE UNIVERSITY OF TECHNOLOGY   (Australia)

^d UNIVERSITY OF TASMANIA   (Australia)

Author keywords

Biological specimen biobanks; Disclosure; Incidental findings; Research ethics; Research results

Indexed keywords

ADULT; AUSTRALIA; BIOBANK; DONOR; DUTY TO RECONTACT; EPIDEMIOLOGY; ETHICS; GENOMICS; HUMAN; INCIDENTAL FINDING; INTERPERSONAL COMMUNICATION; MEDICAL INFORMATICS; MEDICAL RESEARCH; PRACTICE GUIDELINE; PROCEDURES; PSYCHOLOGY; PUBLIC OPINION; RESEARCH SUBJECT; STATISTICS AND NUMERICAL DATA;

ADULT; AUSTRALIA; BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; DISCLOSURE; DUTY TO RECONTACT; GENOMICS; GUIDELINES AS TOPIC; HUMANS; INCIDENTAL FINDINGS; MEDICAL INFORMATICS; PUBLIC OPINION; RESEARCH SUBJECTS; TISSUE DONORS;

EID: 84949200446     PISSN: 14440903     EISSN: 14455994     Source Type: Journal    
DOI: 10.1111/imj.12911     Document Type: Article

References (26)

1. National Health and Medical Research Council (Australia). Targeted consultation paper, 'Return of Results from 'Omics'-based Research and Clinical Practice' Canberra: Australian Government; 2014.
2. Knoppers BM, Joly Y, Simard J, Durocher F. The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet 2006; 14(1322): 1170-8.
3. Wolf SM, Crock BN, Van Ness B, Lawrenz F, Kahn JP, Beskow LM et al. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med 2012; 14(4): 361-84.
4. Cambon-Thomsen A. The social and ethical issues of post-genomic human biobanks. Nat Rev Genet 2004; 5: 866-73.
5. Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM. Trends in ethical and legal frameworks for the use of human biobanks. Euro Respir J 2007; 30(2): 373-82.
6. Hoeyer K. The ethics of research biobanking: a critical review of the literature. Biotechnol Genet Eng Rev 2008; 25: 429-52.
7. Hoeyer K. Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity? Public Health Genomics 2010; 13(6): 345-52.
8. Otlowski MFA. Disclosure of genetic information to at-risk relatives: recent amendments to the Privacy Act 1988 (Cwlth). Med J Aust 2007; 187(7): 398-9.
9. Stranger M, Bell E, Nicol D, Otlowski M, Chalmers D. Human genetic databanks in Australia: indications of inconsistency and confusion. New Genet Soc 2008; 27(4): 311-21.
10. Catchpoole D, deFazio A, Devereux L, Fleming M, Hof M, Schmidt C et al. The importance of biorepository networks. The Australasian Biospecimens Network-Oncology. Australas J Med Sci 2007; 28: 16-20.
11. 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, University of Tasmania, 2007; 184-201.
12. Kaye J, Boddington P, de Vries J, Hawkins N, Melham K. Ethical implications of the Use of whole genome methods in medical research. Eur J Hum Genet 2010; 18: 398-403.
13. Clayton EW, McGuire AL. The legal risks of returning results of genomics research. Genet Med 2012; 14(4): 473-7.
14. Bledsoe MJ, Clayton EW, McGuire AL, Grizzle WE, O'Rourke PP, Zeps N. Return of research results from genomic biobanks: cost matters. Genet Med 2013; 15(2): 103-5.
15. Critchley CR, Nicol D, Otlowski MF, Stranger MJ. Predicting intention to biobank: a national survey. Eur J Public Health 2012; 22: 139-44.
16. Chalmers D. Genetic research and biobanks. Methods Mol Biol 2011; 675: 1-37.
17. Cousins G, McGee H, Ring L, Conroy R, Kay EW. Public perceptions of biomedical research: a survey of the general population in Ireland. Ireland: Royal College of Surgeons in Ireland. Department of Health and Children. Health Research Board, 2005.
18. 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(4): 433.
19. Kettis-Lindblad A, Ring L, Viberth E, Hansson MG. Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study. Scand J Public Health 2007; 35(2): 148.
20. Young MA, Herlihy A, Mitchell G, Thomas DM, Ballinger M, Tucker K et al. The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research. Clin Sarcoma Res 2013; 3(1): 11.
21. Ravitsy V, Wilfond BS. Disclosing individual genetic results to research participants. Am J Bioeth 2006; 6(6): 24-36.
22. Nylund KL, Asparouhov T, Muthén BO. Deciding on the number of classes in latent class analysis and growth mixture modeling: a Monte Carlo simulation study. Struct Equ. Model 2007; 14: 535-69.
23. Muthén LK, Muthén BO. Mplus User's Guide. 7th Edn. Los Angeles, CA: Muthén & Muthén; 2010.
24. Haga SB, O'Daniel JM, Tindall GM, Lipkus IR, Agans R. Public attitudes towards ancillary information revealed by pharmacogenetic testing under limited information conditions. Genet Med 2011; 13(8): 723-8.
25. Wakefield CE, Thorne H, Kirk J, Niedermayr E, Doolan EL, Tucker K. Improving mutation notification when new genetic information is identified in research: a trial of two strategies in familial breast cancer. Genet Med 2013; 15(3): 187-94.
26. National Health and Medical Research Council (Australia). National Statement on Ethical Conduct in Human Research; 2007.