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Responsibilities of Researchers in Genetics

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Ethical Challenges in Genomics Research
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Abstract

What responsibilities do those engaged in genomics research have? It is vital to address this question, but the answer is unclear. In this chapter researcher responsibility is explored by examining responsibility in health, through comparison and contrast with the responsibilities of medical practitioners, with a brief consideration of the responsibilities in law, and philosophical consideration of the nature of responsibility. There have been recent calls for researchers in genomics to take on expanding responsibilities, but there are genuine difficulties, created for example by the large size of many research networks. Researchers may have specific responsibilities not just to particular research subjects, but also to the wider community. The responsibilities of research subjects are also considered. Just as we have seen in the case of individual autonomy, the wider context of responsibility must be addressed. Some key research findings from moral and social psychology about taking on or avoiding responsibility are considered.

The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs, or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.

Nuremberg Code (Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Vol. 2 1949).

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References

  • Appelbaum PS, Roth LH, Lidz CW, Benson P, Winslade W (1987) False hopes and best data – consent to research and the therapeutic misconception. Hastings Cent Rep 17(2):20–24

    Article  PubMed  CAS  Google Scholar 

  • Arribas-Ayllon M, Featherstone K, Atkinson P (2011) The practical ethics of genetic responsibility: non-disclosure and the autonomy of affect. Soc Theor Health 9:3–23

    Article  Google Scholar 

  • Austin MA (2002) Ethical issues in human genome epidemiology: a case study based on the Japanese American Family Study in Seattle, Washington. Am J Epidemiol 155(7):585–592

    Article  PubMed  Google Scholar 

  • Berg K (2001) The ethics of benefit sharing. Clin Genet 59:240–243

    Article  PubMed  CAS  Google Scholar 

  • Boddington P (2009) Shared responsibility agreements: causes of contention. In: Dawson A (ed) The philosophy of public health. Ashgate, Aldershot, pp 85–100

    Google Scholar 

  • Botkin JR (2001) Protecting the privacy of family members in survey and pedigree research. JAMA 285(2):207–211. doi:10.1001/jama.285.2.207

    Article  PubMed  CAS  Google Scholar 

  • Caparo Industries plc v Dickman (1990). 2AC 605.

    Google Scholar 

  • Cassa CA, Schmidt B, Kohane IS, Mandl KD (2008) My sister’s keeper?: genomic research and the identifiability of siblings. BMC Med Genom 1. doi:doi: 10.1186/1755-8794-1-32

  • Caulfield T, AL McGuire, Cho M, JA Buchanan, MM Burgess (2008a) Research ethics recommendations for whole genome research: consensus statement. PLoS Biol 6(3). doi:doi10.1371/journal.pbio.0060073

    Google Scholar 

  • Caulfield T, McGuire AL, Cho MK, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer-Edwars K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN, Sugarman J, Timmons M (2008b) Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol 6(3):e73, doi:10.1371/journal.pbio.0060073

    Article  PubMed  Google Scholar 

  • Chandola T, Britton A, Brunner E, Hemingway H, Malik M, Kumari M, Badrick E, Kivimaki M, Marmot M (2008) Work stress and coronary heart disease: what are the mechanisms? Eur Heart J 29:640–648. doi:doi:10.1093/eurheart/ehm584

    Article  PubMed  Google Scholar 

  • Cho M (2008) Understanding incidental findings in the context of genetics and genomics. J Law Med Ethics 36:280–285

    Article  PubMed  Google Scholar 

  • Chokshi DA, Kwiatkowski DP (2005) Ethical challenges of genomic epidemiology in developing countries. Genomics Soc Policy 1(1):1–15

    Google Scholar 

  • Chokshi DA, Parker M, Kwiatkowski DP (2006) Data sharing and intellectual property in a genomic epidemiology Network: policies for large-scale research collaboration. Bull World Health Organ 84(5):382–387

    Article  PubMed  Google Scholar 

  • Darley JM, Latane B (1968) Bystander intervention in emergencies: diffusion of responsibility. J Pers Soc Psychol 8(4):377–383

    Article  PubMed  CAS  Google Scholar 

  • Donaldson SL (2003) Making amends: a consultation paper setting out proposals for reforming the approach to clinical negligence in the NHS. Department of Health, London

    Google Scholar 

  • Featherstone K, Atkinson P, Bharadwaj A, Clarke A (2006) Risky relations: family, kinship and the new genetics. Berg, Oxford

    Google Scholar 

  • Fitzpatrick M (2001) The tyranny of health: doctors and the regulation of lifestyle. Routledge, Abingdon

    Google Scholar 

  • Forsberg JS, Hansson MG, Eriksson S (2009) Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results. Eur J Hum Genet 17(12):1544–9

    Article  PubMed  Google Scholar 

  • General Medical Council (2006) Good medical practice. General Medical Council, London

    Google Scholar 

  • General Medical Council (2009) Confidentiality. General Medical Council, London

    Google Scholar 

  • Glover J (1970) Responsibility. Routledge and Kegan Paul, London

    Google Scholar 

  • HapMap Consortium TI (2004) Integrating ethics and science in the International HapMap project. Nat Rev Genet 5:467–475

    Article  Google Scholar 

  • Human Genetics Commission (2011) Increasing options, informing choice. Human Genetics Commission, London

    Google Scholar 

  • Johnson C, Kaye J (2004) Does the UK Biobank have a legal obligation to feedback individual findings to participants? Med Law Rev 12:239–267

    Article  Google Scholar 

  • Knoppers BM (2000) Population genetics and benefit sharing. Commun Genet 3:212–214

    Article  CAS  Google Scholar 

  • Mascalzoni D, Hicks A, Pramstaller P, Wjst M (2008) Informed consent in the genomics era. PLoS Med 5(9):e192

    Article  PubMed  Google Scholar 

  • Mason JK, MCall Smith RA, Laurie G (2002) Law and medical ethics, 6th edn. Butterworths, London

    Google Scholar 

  • McGuire AL, Caulfield T, Cho MK (2008) Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet 9(2):152–156

    Article  PubMed  CAS  Google Scholar 

  • Milgram S (1974) Obedience to authority. Harper Collins, New York

    Google Scholar 

  • Miller FG, Mello MM, Joffe S (2008) Incidental findings in human subjects research: what do investigators owe research participants? J Law Med Ethics 36(2):271–279

    Article  PubMed  Google Scholar 

  • Moriarty T (1975) Crime, commitment, and the responsive bystander: two field experiments. J Pers Soc Psychol 31(2):370–376

    Article  Google Scholar 

  • National Institute for Clinical Excellence. http://www.nice.org.uk/. Accessed July 2011

  • New York Times (1964) Queens woman is stabbed to death in front of her home. New York Times, March 13, p 26

    Google Scholar 

  • Re Creutzfeldt-Jakob Disease litigation (2000).

    Google Scholar 

  • Rotimi C, Leppart M, Matsuda I, Zeng C, Zhang H, Adebamowo C, Ajayi I, Aniagwu T, Dixon M, Fukushima Y, Macer D, Marshall P, Nkwodimmah C, Peiffer A, Royal C, Eiko S, Zhao H, Wang VO, Mcewan J, HapMap Consortium TI (2007) Community engagement and informed consent in the International HapMap project. Commun Genet 10:186–198. doi:10.1159/000101761

    Article  Google Scholar 

  • Sachs L (1996) Causality, responsibility and blame – core issues in the cultural construction and subtext of prevention. Sociol Health Illn 18(5):632–652

    Article  Google Scholar 

  • Sartre J-P (1973) Existentialism and humanism (trans: Mairet P). Eyre Methuen, London

    Google Scholar 

  • Schroeder D (2007) Benefit sharing: it’s time for a definition. J Med Ethics 33(4):205–209

    Article  PubMed  CAS  Google Scholar 

  • Stansfeld SA, Marmot M (eds) (2002) Stress and the heart: psychosocial pathways to coronary heart disease. BMJ Books, London

    Google Scholar 

  • Time (1968) Diary of a vandalised car. Time Magazine, October 1st, Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, vol. 2 (1949). US Government Printing Office, Washington DC

    Google Scholar 

  • Warin M, Moore V, Zivkovic T, Davies M (2011) Telescoping the origins of obesity to women’s bodies: How gender inequalities are being squeezed out of Barker’s hypothesis. Ann Hum Biol 38(4):453–460. doi:doi:10.3109/03014460.2011.591829

    Article  PubMed  Google Scholar 

  • Warnock M (1990) Boys and girls to order, and rightly. The Times, April 20th

    Google Scholar 

  • Zimbardo P (2007) The Lucifer effect: how good people turn evil. Rider, London

    Google Scholar 

Download references

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Correspondence to Paula Boddington .

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Boddington, P. (2012). Responsibilities of Researchers in Genetics. In: Ethical Challenges in Genomics Research. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-23699-0_9

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