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Genetic Moralism and Health

Published online by Cambridge University Press:  22 May 2019

Abstract:

This article examines the moralistic language and arguments used in relation to genetics. The focus is on three practices: (1) the claims that there is a duty to know about one’s own genetic makeup, (2) assertions that genetic information should be used to inform reproductive decisions, and (3) the proposition that there are moral reasons to participate in biobank research. With these three, the author contends that there are equally good, if not better, arguments to challenge them from a Millian perspective. Furthermore, especially in the current political climate, there is a need to respect people’s privacy concerns.

Type
Special Section: Health, Morality, and Moralism
Copyright
Copyright © Cambridge University Press 2019 

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Footnotes

The author thanks the Academy of Finland (project SA 307467) and the Finnish Ministry for Agriculture and Forestry (project MMM 248774) for their financial support.

References

Notes

1. For examples from Finland, see, Snell, K. Health as the moral principle of post-genomic society: Data-driven arguments against privacy and autonomy. Cambridge Quarterly of Healthcare Ethics 2019;28(2):201214.Google Scholar

2. First of many, Takala, T. The right to genetic ignorance confirmed. Bioethics 1999;13:288–93.CrossRefGoogle ScholarPubMed

3. Takala, T. Right to Know and Right Not to Know. In: Chadwick, R, ed. Encyclopedia of Applied Ethics. San Diego, CA: Academic Press; 2011.Google Scholar

4. For classics, see, Ten, CL. Paternalism and morality. Ratio 1971;13:5666Google Scholar and Dworkin, G. Paternalism. The Monist 1972;56:6484.CrossRefGoogle Scholar

5. Häyry, M. Justice and the possibility of good moralism in bioethics. Cambridge Quarterly of Healthcare Ethics 2019;28(2):236–63.Google Scholar

6. For a detailed discussion on paternalism in the context of medical ethics see e.g. Häyry, H. The Limits of Medical Paternalism. London and New York: Routledge, 1991.CrossRefGoogle Scholar

7. Rhodes, R. Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic information. Journal of Medicine and Philosophy 1998;23:1030,18.CrossRefGoogle Scholar

8. Takala, T, Häyry, M. Genetic ignorance, moral obligations, and social duties. Journal of Medicine and Philosophy 2000;25:107–13, at 109–10.CrossRefGoogle ScholarPubMed

9. Mill, JS. On Liberty. Cambridge University Press Edition ed. Collini, S. New York: CUP; 2013:82.Google Scholar

10. nuffieldbioethics.org/wp-content/uploads/Genome-editing-and-human-reproduction-FINAL-website.pdf (last accessed 18 July 2018).

11. Interestingly, the report refers to CRISPR-Cas9 as method of achieving this and it came out just about at the same time as an article in Nature Biotechnology that questions the safety and precision of that very method. Kosicki M, Tomberg K, Bradley A. Repair of double-strand breaks induced by CRISPR-Cas9 leads to large deletions and complex rearrangements. Nature Biotechnology; available at doi:10.1038/nbt.4192 (Advance online publication; last accessed July 18, 2018).

12. BBC news, Published on 17 July 2018; available at https://www.bbc.co.uk/news/health-44849034?SThisFB (last accessed 18 July 2018).

13. Boardman F. As someone with a genetic condition, I’m worried genome editing might be used to make permanent changes to the blueprint of human existence. Independent, 17 July 2018; available at https://www.independent.co.uk/voices/genome-editing-human-genes-designer-babies-illness-traits-diseases-disabilities-nuffield-council-a8451491.html (last accessed 18 July 2018).

14. Matthews-King A. Designer babies: Picking traits for non-medical reasons could be ’morally permissible,’ says UK ethics group. Independent. July 16, 2018; available at https://www.independent.co.uk/news/health/designer-babies-gene-editing-genetics-genome-nuffield-ethics-disease-a8449971.html (last accessed 18 July 2018).

15. Kass, LR. Life, Liberty and the Defence of Dignity: The Challenge for Bioethics. San Francisco, CA: Encounter Books; 2002.Google Scholar

16. Habermas, J. The Future of Human Nature. Transl. by Rehg, W, Pensky, M, Beister, H. Cambridge: Polity Press; 2003.Google Scholar

17. Sandel, M. The Case Against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: The Belknap Press of Harvard University Press; 2007.Google Scholar

18. Vehmas, S. Parental responsibility and the morality of selective abortion. Ethical Theory and Moral Practice 2002;5:463–83.CrossRefGoogle ScholarPubMed

19. decode.com (last accessed 22 July 2018).

20. geenivaramu.ee (last accessed 22 July 2018).

21. See e.g. Sutrop, M, Simm, K. The Estonian healthcare system and the genetic database project: From limited resources to big hopes. Cambridge Quarterly of Healthcare Ethics 2004;13:254–62.CrossRefGoogle ScholarPubMed

22. For a more general study on the ethical, legal and social aspects of biobanks, see e.g. Häyry, M, Takala, T. In: Häyry, M, Chadwick, R, Árnason, V, Árnason, G, eds. The Ethics and Governance of Human Genetic Databases. New York: Cambridge University Press; 2007:1436.Google Scholar

23. 23andme.com (last accessed 22 July 2018.)

24. www.biopankki.fi/en/ (last accessed 22 July 2018).

25. See note 24.

27. Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV. 1997, § 2. http://conventions.coe.int/treaty/en/treaties/html/164.htm

28. Takala, T. Setting a dangerous precedent? Ethical issues in human genetic database research. Medical Law International 2007;8:105–37, 127–8.CrossRefGoogle Scholar

29. www.kaypahoito.fi/web/english/home (last accessed 25 July 2018).