Closure of population biobanks and direct-to-consumer genetic testing companies

Human Genetics

Volumn 130, Issue 3, 2011, Pages 425-432

  Zawati, Ma'n H ^a   Borry, Pascal ^b,c   Howard, Heidi Carmen ^b,d  

^a MCGILL UNIVERSITY   (Canada)

^b UNIVERSITY OF LEUVEN   (Belgium)

^c VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^d UNIVERSITY OF BASEL   (Switzerland)

Author keywords

[No Author keywords available]

Indexed keywords

BIOETHICS; CONSUMER; GENETIC DISORDER; GENETIC SCREENING; GENETIC VARIABILITY; HEALTH CARE FACILITY; HEALTH CARE POLICY; HUMAN GENOME PROJECT; PRIORITY JOURNAL; REVIEW; ETHICS; HUMAN; INFORMED CONSENT; LABORATORY DIAGNOSIS; ORGANIZATION AND MANAGEMENT; POPULATION GENETICS; PRACTICE GUIDELINE; PRIVACY;

BIOLOGICAL SPECIMEN BANKS; GENETIC TESTING; GENETICS, POPULATION; GUIDELINES AS TOPIC; HEALTH FACILITY CLOSURE; HUMANS; INFORMED CONSENT; PRIVACY; SPECIMEN HANDLING;

EID: 80053312789     PISSN: 03406717     EISSN: 14321203     Source Type: Journal    
DOI: 10.1007/s00439-011-1019-4     Document Type: Review

References (34)

1. Burton PR, Hansell AL, Fortier I, Manolio TA, Khoury MJ, Little J, Elliott P (2009) Size matters: just how big is BIG? Int J Epidemiol 38(1):263-273
2. CARTaGENE (2009) Cartagene management policy version 2.1. http://www.cartagene.qc.ca/images/stories/ cartagene%20management%20policy%20dec09.pdf. Accessed 15 April 2011
3. Centre of Genomics and Policy (2011) HumGen International Database. http://www.humgen.org/int/index-lang.cfm?lang=2. Accessed 18 February 2011
4. Centre of Genomics and Policy DTCGen (2011) International database on the legal and socio-ethical aspects of population genetics. http://www.dtcgenetest. org. Accessed 18 February 2011
5. Church G, Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J, Bobrow M, Weir B, Consortium PG (2009) Public access to genome-wide data: Wve views on balancing research with privacy and protection. PLoS Genet 5(10):e1000665
6. Collins F (2010) Has the revolution arrived? Nature 464(7289):674-675
7. Council for International Organizations of Medical Science (2002) International ethical guidelines for biomedical research involving human subjects. http://www.cioms.ch/publications/layout-guide2002.pdf. Accessed 26 April 2011
8. Council of Europe (2006) Recommendation rec(2006)4 of the Committee of Ministers to Member States on Research on Biological Materials of Human Origin. https://wcd.coe.int/wcd/View-Doc.jsp?id=977859
9. Cutter AM, Wilson S, Chadwick R (2004) Balancing powers: examining models of biobank governance. J Int Biotechnol Law 1(5):187-192
10. European Society of Human Genetics (2003) Data storage and DNA banking for biomedical research: technical, social and ethical issues. Eur J Hum Genet 11(Suppl 2):8-10. doi:10.1038/sj.ejhg.5201115 (Pubitemid 38263566)
11. European Society of Human Genetics (ESHG) (2010) Statement of the ESHG on direct-to-consumer genetic testing for health-related purposes. Eur J Hum Genet 18:1-3
12. Genetics and Public Policy Center (2006) Direct-to-consumer genetic testing: empowering or endangering the public? http://www.dnapolicy.org/policy. issue.php?action=detail&issuebrief-id=32. Accessed 17 February 2011
13. German National Ethics Council (2010) Human biobanks for research. http://www.ethikrat.org/files/der-opinion-human-biobanks.pdf. Accessed 26 April 2011
14. Government of Iceland, Ministry of Welfare (2000) Act on biobanks. http://eng.velferdarraduneyti.is/acts-of-Parliament/nr/20093. Accessed 26 April 2011
15. Government of Norway (2003) Act relating to biobanks. European Commission. http://ec.europa.eu/research/biosociety/pdf/norwegian-act-biobanks. pdf. Accessed 26 April 2011
16. Government of Sweden, Ministry of Health and Social Affairs (2003) Biobanks in medical care act. http://www.sweden.gov.se/content/1/c6/02/31/26/ f69e36fd.pdf. Accessed 26 April 2011
17. Government of Sweden, Ministry of Health and Social AVairs (2010) A new biobanks act (Swedish Government OYcial Report). http://www.regeringen.se/ content/1/c6/15/65/67/d5441333.pdf. Accessed 26 April 2011 (in Swedish)
18. Howard HC, Knoppers BM, Borry P (2010) Blurring lines. EMBO Rep 11:579-582
19. Janger EJ (2005) Genetic information, privacy and insolvency. J Law Med Ethics 33(1):79-88 (Pubitemid 40598046)
20. Khoury MJ (2004) The case for a global human genome epidemiology initiative. Nat Genet 36:1027-1028
21. Knoppers BM (2010) Return of individual research results: why the fuss? Gravitas 43(4):17
22. Knoppers BM, Abdul-Rahman (Zawati) MH (2008) Biobanks in the literature. In: Elger B, Biller-Andorno N, Capron AM (eds) Ethical issues in governing biobanks: global perspectives. Ashgate Publishing, Hampshire
23. Knoppers BM, Abdul-Rahman (Zawati) MH (2009) Health privacy in genetic research: populations and persons. Politics Life Sci 28(2):99-101
24. LifeGene (2009) LifeGene ethics policy version 3.2. http://lifegene.ki. se/ethical-issues/documents/090331LifeGeneEthicsPolicyv32.pdf. Accessed 26 April 2011
25. McGowan ML, Fishman JR, Lambrix MA (2010) Personal genomics and individual identities: motivations and moral imperatives of early users. New Genet Soc 29(3):261-290
26. Mitchell PB, Meiser B, Wilde A, Fullerton J, Donald J, Wilhelm K, Schofield PR (2010) Predictive and diagnostic genetic testing in psychiatry. Clin Lab Med 30:829-846
27. Organisation for Economic Co-operation and Development (2009) Guidelines on human biobanks and genetic research databases Pathway Genomics (2010) Privacy statement. https://www.pathway.com/about-us/privacy-policy. Accessed 10 March 2011
28. P3G and Phoebe Consortia (2009) The P3G Lexicon. http://www. p3gobservatory.org/lexicon/list.htm. Accessed 18 February 2011
29. Robertson JA (2003) Ethical and legal issues in genetic biobanking. In: Knoppers BM (ed) Populations and genetics: legal and socio-ethical perspectives. Brill Academic Publishers, Leiden, pp 297-309
30. Rothstein MA (2005) Expanding the ethical analysis of biobanks. J Law Med Ethics 33:89-101 (Pubitemid 40598047)
31. Stephens N (2011) onCore UK: the 4m cancer tissue bank that closed. Newsl ESRC Genomics Netw 13:21-23
32. Thorisson GA, Muilu J, Brookes AJ (2009) Genotype-phenotype databases: challenges and solutions for the post-genomic era. Nat Rev Genet 10(1):9-18
33. UK Biobank (2006) Ethics & governance framework version 2.0. http://www.ukbiobank.ac.uk/docs/EGF-Version2-July%2006%20most%20uptodate.pdf. Accessed 26 April 2011
34. Zawati M, Van Ness B, Knoppers B (2011) Incidental Wndings in genomic research: a review of international norms. GenEdit 9(1):1-8