Building Trust in 21st Century Genomics

G3: Genes, Genomes, Genetics

Volumn 3, Issue 8, 2013, Pages 1209-1211

  Szego, Michael J ^a,b,c   Buchanan, Janet A ^b   Scherer, Stephen W ^b,d,e  

^a Centre for Clinical Ethics   (Canada)

^b HOSPITAL FOR SICK CHILDREN   (Canada)

^c UNIVERSITY OF TORONTO   (Canada)

^d HOSPITAL FOR SICK CHILDREN   (Canada)

^e UNIVERSITY OF TORONTO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; GENOMICS; HELA CELL LINE; HUMAN; INFORMED CONSENT; PRACTICE GUIDELINE; PRIVACY; PROFESSIONAL SECRECY; PUBLICATION; RESEARCH ETHICS; RESEARCH SUBJECT; ETHICS; GENETIC DATABASE; HISTORY; LEGISLATION AND JURISPRUDENCE; TRENDS;

DATABASES, GENETIC; GENOMICS; HELA CELLS; HISTORY, 21ST CENTURY; HUMANS;

EID: 84896058671     PISSN: None     EISSN: 21601836     Source Type: Journal    
DOI: 10.1534/g3.113.007690     Document Type: Article

References (28)

1. Adey, A., J. N. Burton, J. O. Kitzman, J. B. Hiatt, A. P. Lewis et al., 2013 The haplotype-resolved genome and epigenome of the aneuploid HeLa cancer cell line. Nature. Volume 500: 207-211.
2. Ali-Khan, S. E., A. S. Daar, C. Shuman, P. N. Ray, and S. W. Scherer, 2009 Whole genome scanning: Resolving clinical diagnosis and management amidst complex data. Pediatr. Res. 66: 357-363.
3. Buchanan, J. A., A. R. Carson, D. Chitayat, D. Malkin, M. S. Meyn et al., 2009 The cycle of genome-directed medicine. Genome Med 1: 16.
4. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2010 Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans.
5. Caulfield, T., A. L. McGuire, M. Cho, J. A. Buchanan, M. M. Burgess et al., 2008 Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biol. 6: e73.
6. Cho, M.K., S. L. Tobin, H. T. Greely, J. McCormick, A. Boyce et al., 2008 Strangers at the benchside: Research ethics consultation. Am. J. Bioeth. 8: 4-13.
7. Church, G. M., 2005 The personal genome project. Mol. Syst. Biol. 1: 2005 0030.
8. Department of Health and Human Services, 2013 HIPAA Administrative Simplification. Available at: http://www.hhs.gov/ocr/privacy/hipaa/administrative/combined/hipaa-simplification-201303.pdf. Accessed: July 2, 2013.
9. Gymrek, M., A. L. McGuire, D. Golan, E. Halperin, and Y. Erlich, 2013 Identifying Personal Genomes by Surname Inference. Science 339: 321-324.
10. Health Insurance Portability and Accountability Act, 1996
11. Homer, N., S. Szelinger, M. Redman, D. Duggan, W. Tembe et al., 2008 Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet. 4: e1000167.
12. Im, H. K., E. R. Gamazon, D. L. Nicolae, and N. J. Cox, 2012 On sharing quantitative trait GWAS results in an era of multiple-omics data and the limits of genomic privacy. Am. J. Hum. Genet. 90: 591-598.
13. Kaye, J., 2012 The tension between data sharing and the protection of privacy in genomics research. Annu. Rev. Genomics Hum. Genet. 13: 415-431.
14. Kolata, G., 2013 Poking Holes in Genetic Privacy, New York Times, NY.
15. Landry, J. J., P. T. Pyl, T. Rausch, T. Zichner, M. M. Tekkedil et al., 2013 The Genomic and Transcriptomic Landscape of a HeLa Cell Line. G3: Genes/Genomes/Genetics. 3: 1213-1224.
16. Meslin, E. M., 2010 The value of using top-down and bottom-up approaches for building trust and transparency in biobanking. Public Health Genomics 13: 207-214.
17. Nature, 2010 Human genome: Genomes by the thousand. Nature 467: 1026-1027.
18. Presidential Commission for the Study of Bioethical Issues, 2012 Privacy and Progress in Whole Genome Sequencing. Available at: http://www. bioethics.gov/node/764. Accessed: June 27, 2013.
19. Schadt, E. E., S. Woo, and K. Hao, 2012 Bayesian method to predict individual SNP genotypes from gene expression data. Nat. Genet. 44: 603-608.
20. Scherer, S. W., 2012 Genomics is the medium for 21st century biology. Genome 55: v.
21. Skloot, R., 2009 The Immortal Life of Henrietta Lacks, Crown Publishers, New York.
22. Skloot, R., 2013 The Immortal Life of Henrietta Lacks, the Sequel. New York Times, New York.
23. Sperling, D., 2008 Posthumous Interests: Legal and Ethical Perspectives, Cambridge University Press.
24. Tabor, H. K., B. E. Berkman, S. C. Hull, and M. J. Bamshad, 2011 Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am. J. Med. Genet. A. 155A: 2916-2924.
25. The 1000 Genomes Project Consortium, 2012 An integrated map of genetic variation from 1,092 human genomes. Nature 491: 56-65.
26. The World Medical Association, 2008 Declaration of Helsinki. World Med J. 54: 122-125.
27. Toronto International Data Release Workshop, 2009 Prepublication data sharing. Nature 461: 168-170.
28. U.S. Department of Health and Human Services, 2009 Protection of Human Research Subjects. 45 CFR 46.