The right to know and the right not to know: The emerging debate

The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility

Volumn , Issue , 2014, Pages 13-23

  Chadwick, Ruth ^a,b,c,d   Levitt, Mairi ^e   Shickle, Darren ^{b,f,g,h,i,j,k}  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b Human Genome Organisation ^*  (United Kingdom)

^c Food and Agriculture Organisation of the United Nations (FAO)   (Italy)

^d HASTINGS CENTER   (United States)

^e LANCASTER UNIVERSITY   (United Kingdom)

^f UNIVERSITY OF LEEDS   (United Kingdom)

^g UNIVERSITY OF SHEFFIELD   (United Kingdom)

^h JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

ⁱ GEORGETOWN UNIVERSITY   (United States)

^j U S DEPARTMENT OF HEALTH AND HUMAN SERVICES   (United States)

^k European Research Council   (Belgium)

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Author keywords

[No Author keywords available]

Indexed keywords

EID: 84954152042     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1007/9781139875981.003     Document Type: Chapter

References (17)

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2. Chadwick, Ruth 2011. ‘The communitarian turn: myth or reality?’, Cambridge Quarterly of Healthcare Ethics 20(4): 546-53.
3. Chadwick, Ruth and Berg, Kare 2001. ‘Solidarity and equity: new ethical frameworks for genetic databases’, Nature Reviews Genetics 2. 318-21.
4. Chadwick, Ruth and O'Connor, Alan 2013. ‘Epigenetics and personalized medicine: prospects and ethical issues’, Personalized Medicine 10(5): 463-71.
5. European Commission 2012. Proposal for the EU General Data Protection Regulation. Available at: http://ec.europa.eu/justice/data-protection/docu-ment/review2012/com_2012_11_en.pdf (accessed 8 July 2013).
6. Gymrek, M., McGuire, A. L., Golan, D., Halperin, E. and Erlich, Y. 2013, ‘Identifying personal genomes by surname inference’, Science 339(6117): 321-4.
7. Hildebrandt, Mireille 2008. ‘Defining profiling: a new type of knowledge?’ in M. Hildebrandt and S. Gutwirth (eds.) Profiling the European Citizen: Crossdisciplinary perspectives, Dordrecht: Springer, pp. 17-45.
8. Human Genome Organisation 2007, Statement on Pharmacogenomics, Solidarity and Equity.
9. Husted, Jorgen 1997. ‘Autonomy and a right not to know’, in Ruth Chadwick, Mairi Levitt and Darren Shickle (eds.) The Right to Know and the Right Not to Know, Aldershot, Avebury, pp. 55-68.
10. Knoppers, Bartha and Chadwick, Ruth 1994, ‘The human genome project: under the international ethical microscope’, Science 265: 2035-2036.
11. Knoppers, Bartha and Chadwick, Ruth 2005. ‘Human genetic research: emerging trends in ethics’, Nature Reviews Genetics 6: 75-79.
12. Knoppers, Bartha M. and Saginur, M. 2005, ‘The Babel of genetic data terminology’, Nature Biotechnology 23(8): 925-7.
13. Lunshof, Jeantine, Chadwick, Ruth, Vorhaus, Daniel B. and Church, George M. 2008, ‘From genetic privacy to open consent’, Nature Reviews Genetics 9: 406-11.
14. McGleenan, Tony 1997. ‘Should there be a genetic privacy law?’ in Chadwick et al. (eds.), pp. 43-54.
15. Müller, M. and Kersten, S. 2003, ‘Nutrigenomics, goals and strategies,, Nature Reviews Genetics 4: 315-22.
16. Nissenbaum, Helen 2009, Privacy in Context: Technology, policy, and the integrity of social life, Stanford University Press.
17. Nuffield Council on Bioethics 2011, Solidarity: Reflections on an emerging concept in Bioethics, London.