Book contents
- Frontmatter
- Contents
- List of contributors
- Acknowledgements
- Introduction
- Part I Philosophical and legal issues
- Part II Issues in genetics
- 4 Biobanks and feedback
- 5 Suspects, victims and others: producing and sharing forensic genetic knowledge
- 6 Empowered by choice?
- 7 DIY genetics: the right to know your own genome
- 8 Genomics, inconvenient truths and accountability
- Part III Emerging issues
- Index
- References
8 - Genomics, inconvenient truths and accountability
Published online by Cambridge University Press: 05 September 2014
Book contents
- Frontmatter
- Contents
- List of contributors
- Acknowledgements
- Introduction
- Part I Philosophical and legal issues
- Part II Issues in genetics
- 4 Biobanks and feedback
- 5 Suspects, victims and others: producing and sharing forensic genetic knowledge
- 6 Empowered by choice?
- 7 DIY genetics: the right to know your own genome
- 8 Genomics, inconvenient truths and accountability
- Part III Emerging issues
- Index
- References
Summary
Recently, genetics and genomics have become consumer products, moving beyond the research lab and outside the clinic into the daily life of modern citizens. Direct-to-consumer (DTC) marketed genetic tests are probably the best-known example, the ‘products’ being actually lab services, as Barbara Prainsack discusses in Chapter 7 of this volume. DNA-based genealogy tests to find out more about one’s ancestry were among the first on the market. Now that technology developments have led to the increasing availability of sophisticated but affordable tests, questions concerning genomics applications arise in a new context for individuals and families, and at a larger scale for communities and societies. While individual-centred, clinical and non-clinical use of genetic testing is booming, other areas of genetic research are also changing, as can be seen in, for example, human anthropology and population genetics. New insights and, in particular, new technologies in genomic science are leveraging the broad field of biomedicine and they imply changed patterns of accountability in research. Therefore, established normative frameworks that refer to classical (human) genetics require careful inspection and they may need to be adjusted in order to be applicable to the new knowledge from the genomic sciences.
We aim to contribute to that revision by reviewing some classic cases that challenge our thinking about ethics and accountability in the sciences in various disciplines.
- Type
- Chapter
- Information
- The Right to Know and the Right Not to KnowGenetic Privacy and Responsibility, pp. 116 - 130Publisher: Cambridge University PressPrint publication year: 2014
References
2007. Fear of Knowledge. Against relativism and constructivism. Oxford/New York: Oxford University Press.Google Scholar
, , , , , , and 2011. ‘AmtB-mediated NH3 transport in prokaryotes must be active and as a consequence regulation of transport by GlnK is mandatory to limit futile cycling of NH+4/NH3’, FEBS Letters 585(1): 23–8.CrossRefGoogle ScholarPubMed
, , , , and 2011. ‘Ethical issues in developing pharmacogenetic research partnerships with American indigenous communities’, Clinical Pharmacology & Therapeutics 89(3): 343–5.CrossRefGoogle ScholarPubMed
2010. ‘Native American settlement highlights DNA dilemma’, New Scientist 2757, 27 April 2010.CrossRefGoogle Scholar
2005. ‘The Human Genome Diversity Project: Past, present and future’, Nature Review Genetics 6: 333–40.CrossRefGoogle ScholarPubMed
2005. ‘Professional ethics and the “good” of science’, Interdisciplinary Science Reviews 30(3): 247–56.CrossRefGoogle Scholar
, , , and 2008. ‘Estimating the lost benefits of antiretroviral drug use in South Africa’, Journal of Acquired Immune Deficiency Syndrome 49(4): 410–15.CrossRefGoogle ScholarPubMed
and 2012. Regenesis: How synthetic biology will reinvent nature and ourselves. New York: Basic Books.Google Scholar
2010. ‘DNA returned to tribe, raising questions about consent’, Science 328: 558.CrossRefGoogle ScholarPubMed
2010. ‘Cancer biomarkers: Can we turn recent failures into successes?’ Journal of the National Cancer Institute 102: 1462–7.CrossRefGoogle Scholar
, and 2003. ‘The chemical bases of the various AIDS epidemics: recreational drugs, anti-viral chemotherapy and malnutrition’, Journal of Biosciences 28(4): 383–412.CrossRefGoogle Scholar
2012. ‘Negative results are disappearing from most disciplines and countries’, Scientometrics 90: 891–904.CrossRefGoogle Scholar
2001. Dialogue Concerning the Two Chief World Systems, Ptolemaic & Copernican. Translated by S. Drake, Foreword by A. Einstein, Introduction by J. L. Heilbron. New York: Modern Library.Google Scholar
and 2013. ‘Awareness and acceptable practices: IRB and researcher reflections on the Havasupai lawsuit’, AJOB Primary Research 4(4): 55–63.CrossRefGoogle ScholarPubMed
1979. Genetic Disorders among the Jewish People. Baltimore, MD: John Hopkins University Press.Google Scholar
Guardian Online, ‘David Nutt’s sacking causes mass revolt against Alan Johnson,’ Monday 2 November 2008. Deborah Summers, Sam Jones and Robert Booth. Available online at: .
2010. ‘Indian tribe wins fight to limit research of its DNA’, New York Times, 21 April 2010.
and 2005. ‘Genetic research: Collecting blood to preserve culture?’ Cultural Survival Quarterly 29(4). Available at: (accessed 21 October 2013).Google Scholar
and 2003. ‘Investigative report concerning the medical genetics project at Havasupai’. Available at: (accessed 29 October 2013).
2012. ‘Evolution of Translational OMICS. Lessons learned and the path forward’. Washington DC: The National Academies Press.Google Scholar
2002. Report of the Investigation Committee on the Possibility of Scientific Misconduct in the Work of Hendrik Schön and Co-authors. Available at: (accessed 3 November 2013).
2005. ‘Why most published research findings are false’, PLoS Medicine August 2(8): e124.CrossRefGoogle ScholarPubMed
, , , , , and 2010. ‘Bridging the divide between genomic science and indigenous peoples’, Journal of Law, Medicine & Ethics 38(3): 684–96.CrossRefGoogle ScholarPubMed
2010. ‘The truth wears off – Is there something wrong with the scientific method?’ The New Yorker, 13 December 2010.Google Scholar
and 2012. Flawed Science: The fraudulent research practices of social psychologist Diederik Stapel. Available at: (accessed 3 November 2013).
2013. ‘Is the Havasupai Indian case a fairy tale?’ PLOS Blogs, DNA Science blog, 15 August 2013. Available at: (accessed 21 October 2013).Google Scholar
, , , , , , and 2013. ‘RNA-guided human genome engineering via Cas9’, Science 339: 823–6.CrossRefGoogle ScholarPubMed
and 1993. ‘Inbreeding and developmental stability in a small human population’, Annals of Human Biology 20(4): 389–94.CrossRefGoogle Scholar
, , , , , and 1993. ‘HLA polymorphism in the Havasupai: Evidence for balancing selection’, American Journal of Human Genetics 53: 943–52.Google ScholarPubMed
2010. ‘Dispute over use of DNA’. Letter. New York Times (New York edition), 3 May 2010.
and 2010. ‘The Havasupai Indian tribe case – Lessons for research involving stored biological samples’, New England Journal of Medicine 363(3): 204–7.CrossRefGoogle Scholar
, , and 2007. ‘Development of a rational scale to assess harm of drugs and potential misuse’, The Lancet 369: 1047–53.CrossRefGoogle ScholarPubMed
2009. ‘Government vs science over drug and alcohol policy’, The Lancet 374: 1731–2.CrossRefGoogle ScholarPubMed
, and 2010. ‘Drug harm in the UK: A multicriteria decision analysis’, The Lancet 376: 1558–65.CrossRefGoogle ScholarPubMed
and 2000. ‘Tobacco’s industry efforts subverting International Agency for Research on Cancer’s second-hand smoke study’, The Lancet 355: 1253–9.CrossRefGoogle Scholar
and 2013. ‘The population genetics of the Jewish people’, Human Genetics 132: 119–27.CrossRefGoogle ScholarPubMed
2003. ‘Constructing black Jews: Genetic tests and the Lemba – the “Black Jews” of South Africa’, Developing World Bioethics 3(2): 112–18.CrossRefGoogle Scholar
2013. ‘The ‘Warrior Gene’ and the Maori people: The responsibility of the geneticists’, Bioethics 27(7): 382–7.CrossRefGoogle ScholarPubMed
2011. ‘Voting with their mice: Personal genome testing and the “participatory turn” in disease research’, Accountability in Research 18: 132–47.CrossRefGoogle Scholar
, , , , , and 2013. ‘DNA-directed self-assembly of shape-controlled hydrogels’, Nature Communications 4: 2275 (doi: ).CrossRefGoogle ScholarPubMed
and 2007. ‘Biological design in science classrooms’, Proceedings of the National Academy of Sciences of the USA 104; Suppl. 1: 8669–76.CrossRefGoogle ScholarPubMed
2013. ‘The Genographic Ethical Framework Document’. Available at: (accessed 21 October 2013).
, , , , , , and 2000. ‘Y chromosomes traveling south: The Cohen modal haplotype and the origins of the Lemba – the “Black Jews of Southern Africa”’, American Journal of Human Genetics 66: 674–86.CrossRefGoogle Scholar
, and 2013. ‘Protecting dignitary interests of biobank research participants: Lessons from Havasupai Tribe v Arizona Board of Regents’, Law, Innovation and Technology 5(1): 54–84.CrossRefGoogle Scholar
2010. ‘The Havasupai Indians and the challenge of informed consent for genomic research’, Genomics Law Report, 21 April 2010. Available at: (accessed 21 October 2013).
, , and 1991. ‘NIDDM: Basic research plus education’, The Lancet 338: 1271.CrossRefGoogle ScholarPubMed