The politics of representation in the governance of emergent 'secondary use' biobanks: The case of dried blood spot cards in the Netherlands

Studies in Ethics, Law, and Technology

Volumn 6, Issue 1, 2012, Pages

  Douglas, Conor ^a   Van El, Carla ^a   Radstake, Maud ^b   Van Teeffelen, Sarah ^a   Cornel, Martina C ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b Centre for Society and the Life Sciences   (Netherlands)

Author keywords

Biobank; Dried blood spot; Governance; Heel prick; Neonatal; Screening

Indexed keywords

EID: 84872853873     PISSN: None     EISSN: 19416008     Source Type: Journal    
DOI: 10.1515/1941-6008.1178     Document Type: Review

References (32)

1. Holland WW. and Stewart S. Screening in disease prevention: what works? Oxford: Radcliffe Publishing Ltd. 2005.
2. Loeber JG. Burgard B. Cornel MC. et al. Newborn screening programmes in Europe; arguments and efforts regarding harmonization. Part 1 - From Blood Spot to Screening Result. Journal of Inherited Metabolic Disease 2012 (in print).
3. Kharaboyan L. Avard D. and Knoppers BM. Storing Newborn Blood Spots: Modern Controversies. The Journal of Law, Medicine & Ethics 2004. 741-748.
4. McCabe ER. Utility of PCR for DNA analysis from dried blood spots on filter paper blotters. PCR Methods Appl 1991; 1(2): 99-106.
5. McEwen JE. Reilly PR. Stored Guthrie cards as DNA banks. Am J Hum Genet 1994; 55:196-200.
6. Therrell B. Hannon WH. Pass KA. Lorey F. et al. Guidelines for the retention, storage, and use of residual dried blood spot samples after newborn screening analysis: Statement of the Council of Regional Networks for Genetic Services. Biochemical and Molecular Medicine 1996; 57: 116-124.
7. Ten Kate LP. Loeber JG, de Knijf P. and Bovenberg JA. Trends in onze genen [Trends in our genes]. Medisch Contact 2005; 60(44): 1767-9.
8. Koninklijke Nederlandse Akademie van Wetenschappen (KNAW). [Royal Netherlands Academy of Arts and Sciences] Multifactoriële aandoeningen in het genomics-tijdperk.[Multifactorial disorders in the genomics era] Amsterdam: KNAW, 2006.
9. RIVM [National Institute for Public Health and the Environment]. The Secondary Use of Heel Prick Cards. Bilthoven, the Netherlands: Workshop Report, 2006.
10. Forum Biotechnologie & Genetica [Dutch Forum for Biotechnology and genetics] 2010. Letter to the RIVM regarding heel prick card storage. Accessed December 1st, 2011 http://www.forumbg.nl/files/2010-236pdf.doc.pdf
11. Hollegaard M. Grauholm J. Borglum A. et al. Genome-wide scans using archived neonatal dried blood spot. BMC Genomics 2009; 10: 297.
12. Duquette D. Rafferty AP. Fussman C. et al. Public support for the use of newborn screening dried blood spots in health research. Public Health Genomics 2011; 14:143-152.
13. Couzin-Frankel J. Science gold mine, ethical minefield. Science 2009; 324: 166-168.
14. th 2010.
15. Carmichael M. A spot of trouble. Nature 2011; 475: 156-158.
16. O'Doherty KC. Burgess MM. Edwards K. et al. From consent to institutions: designing adaptive governance for genomic biobanks. Social Science & Medicine 2011; 73: 367-374.
17. Bell RW. et al. The polio survivor as expert: implications for nursing rehabilitation research. Rehabilitation Nursing 1994; 19(4): 198-202.
18. Epstein S. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology & Human Values 1995; 20(4): 408-437.
19. Hanley B. Bradburn J. Barnes M et al. Involving the Public in NHS, Public Health and Social Care Research: Briefing Notes for Researchers Report to INVOLVE. Second edition, Eastleigh: Department of Health. 2003.
20. Tarini BA. Goldenberg A. Singer D. Clark SJ. Et al. Not without my permission: parents' willingness to permit use of newborn screening samples for research. Public Health Genomics 2010; 13:125-130.
21. Fujii C. Sato Y. Harada S et al. Attitude to extended use and long-term storage of newborn screening blood spots in Japan. Pediatrics International 2010; 52: 393-397.
22. Davey A. French D. Dawkins H. et al. New mothers' awareness of newborn screening, and their attitudes to the retention and use of screening samples for research purposes. Genomics, Society and Policy 2005; 1(3): .41-51.
23. Fleck LM. Mongoven A. and Marzec S. Informing the Debate - Stored Blood Spots: Ethical and Policy Challenges. East Lansing, USA: Michigan State Press, 2008.
24. Potter BK. Avard D. and Wilson BJ. Newborn Blood Spot Screening in Four Countries: Stakeholder Involvement. Journal of Public Health Policy 2008; 29: 121-142.
25. Terry SF. and Boyd CD. Researching the biology of PXE: partnering in the process. American Journal of Medical Genetics 2001;106:177-184.
26. Terry SF. Terry PF. Rauen KA et al. Advocacy groups as research organizations: the PXE International example. Nature Reviews Genetics 2007; 8: 157-164.
27. van der Valk T. and Smit C. Patiënten spelen doorslaggevende rol bij biobanken [Crucial role of patients in biobanking: national and international examples]. Ned Tijdschr Geneeskd 2011;155:A2968.
28. RIVM (National Institute of Public Health and the Environment). Letter of response to the Forum Biotechnologie & Genetica regarding heel prick card storage 2010. Accessed January 8th, 2012 http://www.forumbg.nl/files/2010- 251pdf.pdf
29. Nørgaard-Pedersen B. and Hougaard DM. Storage policies and use of the Danish Newborn Screening Biobank. J Inherit Metab Dis 2007; 30:530-536.
30. Davis C. and Abraham J. Rethinking innovation accounting in pharmaceutical regulation: a case study in the deconstruction of therapeutic advance and therapeutic breakthrough. Science Technology and Human Values 2011; 36(6): 791-815.
31. Epstein S. Patient groups and health movements. In Hackett EJ. Amsterdamska O. Lynch M. et al. eds. The Handbook of Science and Technology Studies, Third Edition, Cambridge, Massachusetts: MIT Press, 2008: 499-539.
32. Panofsky A. Generating sociability to drive science: patient advocacy organizations and genetic research. Social Studies of Science 2011; 41: 31-57.