Back to Basics: Application of the Principles of Bioethics to Heritable Genome Interventions

Abstract

Prior to their announcement of the birth of gene-edited twins in China, Dr. He Jiankui and colleagues published a set of draft ethical principles for discussing the legal, social, and ethical aspects of heritable genome interventions. Within this document, He and colleagues made it clear that their goal with these principles was to “clarify for the public the clinical future of early-in-life genetic surgeries” or heritable genome editing. In light of He’s widely criticized gene editing experiments it is of interest to place these draft principles in the larger ethical debate surrounding heritable genome editing. Here we examine the principles proposed by He and colleagues through the lens of Beauchamp and Childress’ Principles of Biomedical Ethics. We also analyze the stated goal that the “clinical future” of heritable genome editing was clarified by He and colleagues’ proposed principles. Finally, we highlight what might be done to help prevent individual actors from pushing forward ahead of broad societal consensus on heritable genome editing.

This is a preview of subscription content, access via your institution.

Notes

  1. 1.

    On page 42 of the Wellcome Trust survey on Research Culture, 71% of participants agreed that the current culture values quantity over quality and 32% agreed that their workplace valued speed of results over quality. This highlights that there is indeed a culture of speed in research, and a drive to publish research results quickly. Retrieved from https://wellcome.ac.uk/sites/default/files/what-researchers-think-about-the-culture-they-work-in.pdf.

  2. 2.

    Regalado, A. (2018) EXCLUSIVE: Chinese Scientists are creating CRISPR babies. MIT Technology Review. Retrieved from http://www.technologyreview.com/s/612458/exclusive-chinese-scientists-are-creating-crispr-babies/.

  3. 3.

    He Jiankui defends 'world's first gene-edited babies'. BBC News. Retrieved from: https://www.bbc.com/news/world-asia-china-46368731.

  4. 4.

    Heritable genome editing and germline genome editing are two terms that are often used interchangeably; however, they imply different things. For the context of this article, heritable genome editing refers to edits made that are indeed heritable, meaning that the genome modification is performed in viable embryos (or gametes) and result in implantation and full-term pregnancy. Germline genome editing refers to any edit made to the genome that does not result in a heritable modification.

  5. 5.

    It should be noted that while the principle of nonmaleficence certainly plays a role in the ethics of heritable genome editing, nonmaleficence is not explicitly covered by He and colleagues proposed principles and therefore a detailed analysis of nonmaleficence will not be covered here.

  6. 6.

    Dr. He, and two other scientists, were charged and found guilty in Chinese courts, for "carrying out human embryo gene editing… for reproductive purposes."(retrieved from: https://www.technologyreview.com/s/614997/he-jiankui-sentenced-to-three-years-in-prison-for-crispr-babies/).

  7. 7.

    These studies were completed by Professors Liang Chen and Zhi’an Zhang of Sun-Yat University (retrieved from: http://scd.sysu.edu.cn/sites/scd.live.dpcms8.sysu.edu.cn/files/2018-11/ChinesePublicAttitudesOnGeneEditing.pdf) and The Pew Research Center (retrieved from: https://www.pewresearch.org/science/2018/07/26/public-views-of-gene-editing-for-babies-depend-on-how-it-would-be-used/) respectively.

  8. 8.

    Although Garland-Thomson’s discussion focuses on disability, it is our view that this same argument applies here to enhancement. Treating a disability, like deafness, to allow people to hear reduces human diversity in the same way that many people pursuing being taller or stronger through genetic enhancement would reduce human diversity.

  9. 9.

    Allhoff discusses the moral permissibility of genetic enhancement technologies if these enhancements are distributed appropriately and serve Rawlsian primary goods (Allhoff 2005). Others have also made arguments for the permissibility of genetic enhancement technologies, see Julian Savulescu’s extensive discussion of this in Genetic Interventions and The Ethics of Enhancement of Human Beings (Savulescu 2009).

  10. 10.

    Rowland, C. (2019). 'There's a lot of screaming into the void'. Toddler's parents battle for coverage of $2.1 million gene therapy. The Washington Post. Retrieved from: https://www.washingtonpost.com/business/economy/theres-a-lot-of-screaming-into-the-void-toddlers-parents-battle-for-coverage-of-21-million-gene-therapy/2019/07/10/76d834bc-9da5-11e9-9ed4-c9089972ad5a_story.html

  11. 11.

    While it is theoretically possible that the edits could be undone by further editing, this would likely carry side-effects/risks of its own.

  12. 12.

    For an overview of the major criticism of the social model of disability see (Shakespeare 2006).

  13. 13.

    When discussing criticisms of the social model of disability, Oliver agrees that the social model of disability does not do many of the thing’s critics wish it did (2013). However, Oliver contends that they have always considered the social model of disability as nothing more than a tool to improve people’s lives. That is the idea we wish to invoke here.

  14. 14.

    Gene therapy’s next installment. (2019). Nature Biotechnology. Retrieved from: https://www.nature.com/articles/s41587-019-0194-z.

  15. 15.

    Canadian parents of babies with rare deadly disease look to Novartis treatment lottery. Retrieved from: https://www.theglobeandmail.com/canada/article-parents-of-babies-with-deadly-rare-disease-desperate-to-win-drug-maker/.

  16. 16.

    Women's Encampment for a Future of Peace and Justice. Seneca Army Depot, NY. Resource Handbook. Retrieved from: https://drive.google.com/file/d/0B2gP3BpuQxH2UnVQOFk3dmRhY3c/view.

References

  1. Allhoff, F. (2005). Germ-line genetic enhancement and Rawlsian primary goods. Kennedy Institute of Ethics Journal, 15(1), 39–56. https://doi.org/10.5840/jpr_2007_8.

    Article  Google Scholar 

  2. Baylis, F. (2016). ‘Broad societal consensus’ on human germline editing. Harvard Health Policy Review, 15(2), 19–23.

    Google Scholar 

  3. Baylis, F., & Robert, J. S. (2004). The inevitability of genetic enhancement technologies. Bioethics, 18(1), 1–26. https://doi.org/10.1111/j.1467-8519.2004.00376.x.

    Article  Google Scholar 

  4. Beauchamp, T. L., & Childress, J. F. (2013). Principles of biomedical ethics (7th ed.). New York: Oxford University Press.

    Google Scholar 

  5. Cyranoski, D. (2019). Russian biologist plans more CRISPR-edited babies. Nature, 2019(570), 7760.

    Google Scholar 

  6. Dolnick, E. (1993). Deafness as culture. The Atlantic, 272(3). Retrieved July 12, 2019, from http://people.uncw.edu/laniers/Dolnick.pdf.

  7. Doudna, J. A. (2020). The promise and challenge of therapeutic genome editing. Nature, 578(7794), 229–236. https://doi.org/10.1038/s41586-020-1978-5.

    Article  Google Scholar 

  8. Etieyibo, E. (2012). Genetic Enhancment, Social Justice, and Welfare-Oriented Patterns of Distribution. Bioethics, 26(6), 296–304. https://doi.org/10.1111/j.1467-8519.2010.01872.x.

    Article  Google Scholar 

  9. Fausto-Sterling, A. (2012). Not your grandma’s genetics: Some theoretical notes. Psychology of Women Quarterly, 36(4), 411–418. https://doi.org/10.1177/0361684312462016.

    Article  Google Scholar 

  10. Fitzpatrick, T., Rosella, L. C., Calzavara, A., Petch, J., Pinto, A. D., Manson, H., et al. (2015). Looking beyond income and education: Socioeconomic status gradients among future high-cost users of health care. American Journal of Preventive Medicine, 49(2), 161–171. https://doi.org/10.1016/J.AMEPRE.2015.02.018.

    Article  Google Scholar 

  11. Friedmann, T. (2019). Genetic therapies, human genetic enhancement, and … eugenics? Gene Therapy, 26(9), 351–353. https://doi.org/10.1038/s41434-019-0088-1.

    Article  Google Scholar 

  12. Garland-Thomson, R. (2012). The case for conserving disability. Journal of Bioethical Inquiry, 9(3), 339–355. https://doi.org/10.1007/s11673-012-9380-0.

    Article  Google Scholar 

  13. Getz, L. J., & Dellaire, G. (2018). Angels and devils: Dilemmas in dual-use biotechnology. Trends in Biotechnology, 36(12), 1202–1205. https://doi.org/10.1016/J.TIBTECH.2018.07.016.

    Article  Google Scholar 

  14. Glass, W. G., McDermott, D. H., Lim, J. K., Lekhong, S., Yu, S. F., Frank, W. A., et al. (2006). CCR5 deficiency increases risk of symptomatic West Nile virus infection. Journal of Experimental Medicine, 203(1), 35–40. https://doi.org/10.1084/jem.20051970.

    Article  Google Scholar 

  15. Graves, J. L., Jr. (2015). Great is their sin: Biological determinism in the age of genomics. The ANNALS of the American Academy of Political and Social Science, 661(1), 24–50. https://doi.org/10.1177/0002716215586558.

    Article  Google Scholar 

  16. Greene, S. (2016). Biological determinism. In The Wiley Blackwell encyclopedia of gender and sexuality studies (pp. 1–3). Singapore: Wiley. https://doi.org/10.1002/9781118663219.wbegss553.

  17. Harris, J. (2000). Is there a coherent social conception of disability? Journal of Medical Ethics, 26(2), 95–100. https://doi.org/10.1136/jme.26.2.95.

    Article  Google Scholar 

  18. Jasanoff, S., Hurlbut, J. B., & Saha, K. (2019). Democratic governance of human germline genome editing. The CRISPR Journal, 2(5), 266–271. https://doi.org/10.1089/crispr.2019.0047.

    Article  Google Scholar 

  19. Lander, E. S., Baylis, F., Zhang, F., Charpentier, E., Berg, P., Bourgain, C., et al. (2019). Adopt a moratorium on heritable genome editing. Nature, 567(7747), 165–168. https://doi.org/10.1038/d41586-019-00726-5.

    Article  Google Scholar 

  20. Liang, P., Xu, Y., Zhang, X., Ding, C., Huang, R., Zhang, Z., et al. (2015). CRISPR/Cas9-mediated gene editing in human tripronuclear zygotes. Protein and Cell, 6(5), 363–372. https://doi.org/10.1007/s13238-015-0153-5.

    Article  Google Scholar 

  21. Matoba, N., Akiyama, M., Ishigaki, K., Kanai, M., Takahashi, A., Momozawa, Y., et al. (2019). GWAS of smoking behaviour in 165,436 Japanese people reveals seven new loci and shared genetic architecture. Nature Human Behaviour, 3(5), 471–477. https://doi.org/10.1038/s41562-019-0557-y.

    Article  Google Scholar 

  22. Michael, N. L. (1999). Host genetic influences on HIV-1 pathogenesis. Current Opinion in Immunology, 11(4), 466–474. https://doi.org/10.1016/S0952-7915(99)80078-8.

    Article  Google Scholar 

  23. National Academies of Science, Engineering and Medicine. (2016). International summit on human gene editing. Olson, S. (Ed.). Washington, DC: National Academies Press. https://doi.org/10.17226/21913.

  24. National Academies of Science, Engineering and Medicine. (2017). Human genome editing: Science, ethics, and governance. Washington, DC: National Academies Press. https://doi.org/10.17226/24623.

    Book  Google Scholar 

  25. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report. Office of human subjects research. Retrieved May 12, 2020, from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html.

  26. Nuffield Council on Bioethics. (2017). Genome editing and human reproduction public survey. Retrieved July 9, 2019, from http://nuffieldbioethics.org/wp-content/uploads/Summary-of-GEHR-public-survey-2018_for-web.pdf.

  27. Oliver, M. (1983). Social work with disabled people. London: Macmillan Education UK. https://doi.org/10.1007/978-1-349-86058-6.

    Book  Google Scholar 

  28. Oliver, M. (2013). The social model of disability: thirty years on. Disability and Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773.

    Article  Google Scholar 

  29. Pozo, F., Moreno, S., Casas, I., Rodriguez-Frandsen, A., Reyes, N., Falcon, A., et al. (2015). CCR5 deficiency predisposes to fatal outcome in influenza virus infection. Journal of General Virology, 96(8), 2074–2078. https://doi.org/10.1099/vir.0.000165.

    Article  Google Scholar 

  30. Salsman, J., & Dellaire, G. (2017). Precision genome editing in the CRISPR era. In Biochemistry and cell biology. Canadian Science Publishing. https://doi.org/10.1139/bcb-2016-0137.

  31. Savulescu, J. (2009). Genetic interventions and the ethics of enhancement of human beings. Readings in the Philosophy of Technology. https://doi.org/10.1093/OXFORDHB/9780199562411.003.0023.

    Article  Google Scholar 

  32. Scheufele, D. A., Xenos, M. A., Howell, E. L., Rose, K. M., Brossard, D., & Hardy, B. W. (2017). U.S. attitudes on human genome editing. Science, 357(6351), 6351. https://doi.org/10.1126/science.aan3708.

    Article  Google Scholar 

  33. Shakespeare, T. (2006). The social model of disability. In L. J. Davis (Ed.), The disability studies reader. London: Psychology Press.

    Google Scholar 

  34. Shapiro, M. H. (1999). The impact of genetic enhancement on equality. Wake Forest Law Review, 34. Retrieved February 2, 2020, from https://heinonline.org/HOL/Page?handle=hein.journals/wflr34&id=571&div=27&collection=journals.

  35. Strawbridge, R. J., Ward, J., Cullen, B., Tunbridge, E. M., Hartz, S., Bierut, L., et al. (2018). Genome-wide analysis of self-reported risk-taking behaviour and cross-disorder genetic correlations in the UK Biobank cohort. Translational Psychiatry, 8(1), 39. https://doi.org/10.1038/s41398-017-0079-1.

    Article  Google Scholar 

  36. Tielbeek, J. J., Barnes, J. C., Popma, A., Polderman, T. J. C., Lee, J. J., Perry, J. R. B., et al. (2018). Exploring the genetic correlations of antisocial behaviour and life history traits. BJPsych Open, 4(6), 467–470. https://doi.org/10.1192/bjo.2018.63.

    Article  Google Scholar 

Download references

Acknowledgements

G.D. is funded for research involving CRISPR technologies by a Project Grant (PJT-156017) from the Canadian Institutes of Health Research (CIHR) and L.J.G. is supported by the Vanier Canadian Graduate Scholarship program through the Natural Sciences and Engineering Research Council of Canada (NSERC). We would also like to thank Dr. Françoise Baylis and Dr. Natalie Kofler for many clarifying and insightful conversations.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Graham Dellaire.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Getz, L.J., Dellaire, G. Back to Basics: Application of the Principles of Bioethics to Heritable Genome Interventions. Sci Eng Ethics 26, 2735–2748 (2020). https://doi.org/10.1007/s11948-020-00226-0

Download citation

Keywords

  • Heritable genome editing
  • CRISPR/Cas9
  • Autonomy
  • Justice
  • Beneficence and non-maleficence