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.
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Notes
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.
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/.
He Jiankui defends 'world's first gene-edited babies'. BBC News. Retrieved from: https://www.bbc.com/news/world-asia-china-46368731.
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.
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.
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/).
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.
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.
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).
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
While it is theoretically possible that the edits could be undone by further editing, this would likely carry side-effects/risks of its own.
For an overview of the major criticism of the social model of disability see (Shakespeare 2006).
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.
Gene therapy’s next installment. (2019). Nature Biotechnology. Retrieved from: https://www.nature.com/articles/s41587-019-0194-z.
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/.
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.
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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.
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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
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DOI: https://doi.org/10.1007/s11948-020-00226-0