Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-14T22:12:15.724Z Has data issue: false hasContentIssue false

From the Right to Know to the Right Not to Know

Published online by Cambridge University Press:  01 January 2021

Abstract

Image of the first page of this content. For PDF version, please use the ‘Save PDF’ preceeding this image.'
Type
Introduction
Copyright
Copyright © American Society of Law, Medicine and Ethics 2014

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Wolf, S. et al., “Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets”, Genetics in Medicine 14, no. 4 (2012): 361384.CrossRefGoogle ScholarPubMed
Hodkinson, K., “The Need to Know – Therapeutic Privilege: A Way Forward”, Health Care Analysis 21, no. 2 (2013): 105129.CrossRefGoogle ScholarPubMed
Chadwick, R. Levitt, M., and Shinckle, D., eds., The Right to Know and Right Not to Know (Aldershot: Ashgate Publishing Company, 1997).Google Scholar
Wertz, D. Fletcher, J. C., eds., Ethics and Human Genetics: A Cross-Cultural Perspective (Berlin: Springer-Verlag, 1989).CrossRefGoogle Scholar
Bennett, R., “Antenatal Genetic Testing and the Right to Remain in Ignorance”, Theoretical Medicine and Bioethics 22, no. 5 (2001): 461471.CrossRefGoogle ScholarPubMed
United Nations Educational, Scientific and Cultural Organization (UNESCO), Universal Declaration on the Human Genome and Human Rights, 1997, art. 5c.Google Scholar
Council of Europe, Convention on Human Rights and Biomedicine (Oveido Convention), 1997, art. 10 (2).Google Scholar
World Medical Association (WMA), Declaration of Lisbon on the Rights of the Patient, 1981 (revised in 2005), art. 7(d)Google Scholar
Public Population Project in Genomics and Society, available at <http://p3g.org/> (last visited January 31, 2014).+(last+visited+January+31,+2014).>Google Scholar
European Society of Human Genetics, available at <https://www.eshg.org/> (last visited January 31, 2014).+(last+visited+January+31,+2014).>Google Scholar
Knoppers, B. M. DescheCnes, M. Zawati, M. H., and Tassée, A.-M., “Population Studies: Return of Research Results and Incidental Findings Policy Statement”, European Journal of Human Genetics 21, no. 3 (2013): 245247.Google ScholarPubMed
Van El, C. G. Cornel, M. C., and Dondorp, W. et al., “Whole Genome Sequencing and Analysis and the Challenges for Health Care Professionals: Recommendations of the European Society of Human Genetics”, European Journal of Human Genetics 21, no. 6 (2013): 580584.CrossRefGoogle Scholar
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December 2010.Google Scholar
Id., at art. 13.2Google Scholar
Id., at art. 13.3Google Scholar
Id., at art. 3.4Google Scholar
Id., at art. 13.3Google Scholar
Finding of Rare Disease Genes in Canada (FORGE Canada) – Adult consent form.Google Scholar
Knoppers, B. M., “Paediatric Research and the Communication of Not-So Incidental Findings”, Journal of the Canadian Paediatric Society 14 no. 4 (2012): 190192.Google Scholar
American College of Medical Genetics and Genomics, Clinical Application of Genomic Sequencing Policy Statement, 2012, at par.8, available at <http://www.acmg.net/StaticContent/PPG/Clinical_Application_of_Genomic_Sequencing.pdf>; (last visited January 31, 2014).;+(last+visited+January+31,+2014).>Google Scholar
Presidential Commission for the Study of Bioethical Issues, Privacy and Progress in Whole Genome Sequencing, Recommendation 3.3 (October 2012), available at <http://bioethics.gov/cms/node/764> (last visited January 31, 2014).+(last+visited+January+31,+2014).>Google Scholar
Green, R. C. Berg, J. S., and Grody, W. W. et al. for “The American College of Medical Genetics and Genomics, ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing”, Genetics in Medicine 15, no. 7 (2013): 565574.CrossRefGoogle ScholarPubMed
See supra note 5, at 469.Google Scholar
Rhodes, R., “Genetic Testing: Is There a Right Not to Know?”, MCN/The American Journal of Maternal/Child Nursing 31, no. 3 (2006): 145.CrossRefGoogle Scholar
Thorogood, A. Knoppers, B. M. et al., “Whole-Genome Sequencing and the Physician”, Clinical Genetics 81, no. 6 (2012): 511513.CrossRefGoogle ScholarPubMed
Tabor, H. K. Berkman, B. E. Hull, S. C., and Bamshad, M. J., “Genomics Really Gets Personal: How Exome and Whole Genome Sequencing Challenge the Ethical Framework of Human Genetics Research”, American Journal of Medical Genetics Part A 155, no. 12 (2011): 29162924.CrossRefGoogle Scholar