My Life Needs Editing” (Mort Sahl) and Genome Editing Needs Ethics
Current Gene Therapy, 2016, Vol. 16, No. 1
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“My Life Needs Editing” (Mort Sahl) and Genome Editing Needs Ethics
Ignacio Anegon and Tuan H. Nguyen
“Ethics are more important than laws” (Wynton Marsalis)
“I can resist everything except temptation” (Oscar Wilde)
Genome editing has evolved over the last 10 years from the use of meganucleases, to ZFNs, to
TALENs and now to the CRISPR-Cas system, with several manuscripts published in Current Gene
Therapy on this topic [1, 2, 4, 6, 7, 9-11]. The CRISPR-Cas system has revolutionized human genome
editing: so easy, so fast, and so inexpensive. After the tremendous successes on genome editing the
germ line of many species and somatic cells of human cells, concerns have been raised on the possibility of genome editing the human germ line or pluripotent stem cells and performing therapeutic human
cloning [3, 5, 8].
This situation encouraged several scientific communities and policy makers to foster international
meetings and release recommendations.
At a 2015 meeting at UNESCO in Paris, independent experts of the Organization’s International Bioethics Committee (IBC)
published a report “Updating its Reflection on the Human Genome and Human Rights.” (http://unesdoc.unesco.org/images/0023/002332/233258e.pdf), “IBC reaffirms the necessity for a ban on human cloning for reproductive purposes and recommends a moratorium on genome editing of the human germline. There is no medical or ethical argument to support the former”. “A special case of debate is posed by the novel techniques for the prevention of mitochondrial DNA disorders. Once
again, it is essential to have reliable international scientific fora to ensure - as it is recommended also in the key conclusions of
the in-depth Report of the Nuffield Council on Bioethics on this topic - that these procedures “are adequately proven to be acceptably safe and effective as treatments” before considering them for use in human beings. Even among scientists, an
agreement on the threshold of what could be considered as “acceptably safe and effective” has not yet been reached.
In 2015, an International Summit on Human Gene Editing in Washington (http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12032015a) concluded that:
1) “Intensive basic and preclinical research is clearly needed and should proceed”; 2) “Many promising and valuable clinical
applications of gene editing are directed at altering genetic sequences only in somatic cells ... There is a need to understand the
risks, such as inaccurate editing, and the potential benefits of each proposed genetic modification. Because proposed clinical
uses are intended to affect only the individual who receives them, they can be appropriately and rigorously evaluated within
existing and evolving regulatory frameworks for gene therapy, and regulators can weight risks and potential benefits in approving clinical trials and therapies.”; 3) “It would be irresponsible to proceed with any clinical use of germline editing unless and
until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks,
potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application... At present, these criteria have not been met for any proposed clinical use: the safety issues have not yet been adequately
explored; the cases of most compelling benefit are limited; and many nations have legislative or regulatory bans on germline
modification. However, as scientific knowledge advances and societal views evolve, the clinical use of germline editing should
be revisited on a regular basis.”; 4) “The international community should strive to establish norms concerning acceptable uses
of human germline editing and to harmonize regulations, in order to discourage unacceptable activities while advancing human
health and welfare. We therefore call upon the national academies … in creating an ongoing international forum to discuss potential clinical uses of gene editing; help inform decisions by national policymakers and others; formulate recommendations
and guidelines; and promote coordination among nations.”
It is clear that gene-specific nucleases applied to genome editing have issues on ethical, societal and even in terms of mankind evolution. These issues need to be discussed and solved by responsible citizens and scientists. This will help to put away
the temptation that scientists may have on the application of these powerful technologies to human cloning as a way to cure
devastating diseases, and as one of the quotes above remembers, temptations are difficult to resist.
Finally, these ethical concerns should not overshadow what has been accomplished already with genome editing, but on the
contrary, accelerate research on the urgent technical and scientific issues that need to be solved for a future widespread application of genome editing of somatic cells.
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Bellec J, Bacchetta M, Losa D, et al. CFTR inactivation by lentiviral vector-mediated RNA interference and CRISPR-Cas9 genome editing in human
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© 2016 Bentham Science Publishers
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Anegon and Nguyen
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Ignacio Anegon and Tuan H. Nguyen
INSERM UMR
1064-Center for Research in Transplantation and Immunology
CHU de Nantes. 30, boulevard
Nantes
France