DIY genetics: The right to know your owngenome

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

Volumn , Issue , 2014, Pages 100-115

  Prainsack, Barbara ^a,b  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b British Royal Society of Arts   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84954128387     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1007/9781139875981.010     Document Type: Chapter

References (15)

1. Chadwick, R. 1997. ‘The philosophy of the right to know and the right not to know’, in R. Chadwick, M. Levitt, and D. Shickle (eds.) The Right to Know and the Right Not to Know, Aldershot: Avebury, pp. 13-22.
2. Chadwick, R., Levitt, M. and Shickle, D. (eds.) 1997, The Right to Know and the Right Not to Know, Aldershot: Avebury.
3. Green, Robert C., Berg, Jonathan S., Grody, Wayne W., Kalia, Sarah S., Korf, Bruce R., Martin, Christa L., McGuire, Amy L., Nussbaum, Robert L., O’Daniel, Julianne M., Ormond, Kelly E., Rehm, Heidi L., Watson, Michael S., Williams, Marc S. and Biesecker, Leslie G. 2013, ‘ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing’, Genetics in Medicine 15(7): 565-74.
4. Gurwitz, D. and Bregman-Eschet, Y. 2009, ‘Personal genomics services: Whose genomes?’, European Journal of Human Genetics 17(7): 883-9.
5. Howard, H. C. and Borry, P. 2012, ‘Is there a doctor in the house? The presence of physicians in the direct-to-consumer genetic testing context’, Journal of Community Genetics 3(2): 259-83.
6. Kang, J., Shilton, K., Estrin D., Burke K. and Hansen M. 2012, ‘Self-surveillance privacy’, Iowa Law Review 97, 809-47.
7. Lunshof, J. E., Church, G. M., and Prainsack, B. 2014, ‘Raw personal data: providing access’, Science 343, 373-4.
8. Parry, B. 2013. ‘Knowing Mycellf TM: Personalized medicine and the economization of prospective knowledge about bodily fate’, in P. Meusburger et al. (eds.) Knowledge and the Economy, Dordrecht: Springer, pp. 157-71.
9. Prainsack, B. 2014. ‘Understanding participation: The “citizen science” of genetics’, in B. Prainsack, S. Schicktanz and G. Werner-Felmayer (eds.), Genetics as Social Practice, Farnham, Ashgate, pp. 147-64.
10. Prainsack, B. and Buyx, A. 2013, ‘A solidarity-based approach to the governance of research biobanks’, Medical Law Review 21(1): 71-91.
11. Prainsack, B. and Vayena, E. 2013 ‘Beyond the clinic: “Direct-to-consumer” genomic profiling services and pharmacogenomics’, Pharmacogenomics 14(4): 403-12.
12. Saukko, P. 2013, ‘State of play in direct-to-consumer genetic testing for lifestyle-related diseases: Market, marketing content, user experiences and regulation’, Proceedings of the Nutrition Society 72(1): 53-60.
13. Topol, E. 2012’ The Creative Destruction of Medicine: How the digital revolution will create better health care, New York: Basic Books.
14. Vayena, E., Gourma, E., Streuli, J., Hafe, E. and Prainsack, B. 2012, ‘Early users of direct-to-consumer genomics in Switzerland’, Public Health Genomics 15(96): 352-62.
15. Vorhaus, D. 2010. ‘The past, present and future of DTC genetic testing regulation’, Genomics Law Report (5 August 2010). Available at: www. genomicslawreport.com/index.php/2010/08/05/the-past-present-and-future-of-dtc-genetic-testing-regulation/(accessed 19 July 2013).