Written by Thais Aguiar
Introduction
In the same year the Universal Declaration of Human Rights celebrated its 70th birthday, an announcement shocked the scientific community worldwide: at a conference in November 2018, a Chinese researcher named Dr. He Jiankui claimed that he succeeded at creating the world’s first gene-edited babies.[1] According to the scientist, he conducted an experiment with selected couples, who were aware of the risks involved, and designed embryos with resistance to HIV infection, which were later implanted and born. Despite Jiankui’s enthusiasm, his announcement was not well-received. Since “disruptive” does not always mean “good,” scientists and society expressed harsh criticism based on many grounds.
The first reactions were skeptical: many have claimed the experiment was not conducted with proper disclosure, an assertion that can undermine the research’s credibility.[2] In fact, the available data is very limited. There are no publications or independent confirmations, and neither the couples or babies were revealed. Even the Southern University of Science and Technology, with which the researcher is associated, claimed a lack of knowledge of the experiment[3]. This was acknowledged by the researcher himself at the conference. Not only are there lapses in transparency and methodology, but there is also the possibility that results were not achieved as declared, assuming the experiment were even successful.
The second concern is more alarming and was expressed by a greater number of people: the sacrifice of moral and ethical standards in the name of scientific achievements. The lack of oversight also means the study may breach scientific ethical boundaries. Furthermore, it could be dangerous to allow a single study define the ethical limits for research, or even let it serve as an example of recklessness for similar initiatives. It comes at no surprise that more than 100 scientists rushed to denounce what may have been a step too far.
Among other relevant considerations, one main point of contention outstands in terms of interest to the entire society: genetic modification might become a possibility for human beings. And this is not necessarily an entirely fictional hypothesis: even though tomorrow is unpredictable, society already lives the information revolution and is constantly creating and expanding its possibilities. As long as biotechnology evolves, all it takes for the link between genetic engineering and human enhancement is a curious researcher.
Thus, there will be a point in which the deadlock between science possibilities and ethical boundaries will become evident. With the rise of new challenges and unpredictable scenarios, a Pandora’s box will be opened for us to question the moral costs of innovation, test current ethical standards and review the meaning of human condition and human rights.
At least for now, the announcement shocked society with fear and doubt, and it was not clear enough for people to be properly informed about the human enhancement debate. Therefore, whether these embryos were actually modified or not is overshadowed by the meaningful role this study plays: after all, do we have the technology to change people? And how can gene editing applications affect society?
Human genome research and current possibilities
Research on the human genome is not a new subject, but the growing development of the genetic engineering field attracts both the scientific community and society as a whole.
Dr. Jiankui used the CRISPR-Cas9 system as his tool, which developed in laboratory and was based on the natural adaptation of some bacteria and living things of the Archaea domain against virus infections. It consists of the joint action of a restriction enzyme (Cas9) and a guiding RNA on a DNA sequence. After the Cas9 enzyme “cuts” the targeted sequence, the DNA repair system is activated and the RNA-guide – or CRISPR, “Clustered Regularly Interspaced Palindromic Repeats” – fills the space with the information it carries.
Although its origin is debatable, the first reference to the operation of CRISPR technology dates back to 1987, when Yoshizumi Ishino[4] studied the immune system of E. coli bacteria. Afterwards, the way bacteria defended itself against viral infections served as a model for the development of yet another means of cell-editing. For the record, altering living cells was already possible thanks to tools such as ZFN and TALEN, which still preserve their applications,6 but the CRISPR system differs from other methods of genome editing because it presents greater accuracy and efficacy at a relatively lower cost.7 Thus, in 2013, the other known methods were overshadowed[5] by the publication of the first successful use of CRISPR in mammalian cells.[6] Since then, biotechnologyhas been reaffirmed as a trendy topic and brought a fruitful debate about new applications on the human genome.
Considering the current research, it suffices to take as a premise that the technology capable of modifying human cells does exist.[7] Even though it is not perfect, it is evolving, together with its field. Biotechnology already has agroeconomic and pharmaceutical uses, and what is to come next in terms of applications depends mostly on the trade-off analysis of the benefits and downsides it may bring for people.
Concerns with gene editing and human enhancement
What Dr. Jiankui tried to do by applying biotechnology to human cells is often called human enhancement,[8] a concept that is still largely controversial in the scientific community.[9] For clarity, human enhancement will be defined as any attempt to overcome the limitations of the body through artificial or natural means and with temporary or permanent result. Such a result must alter the previous human characteristics and capabilities to a new status, and it is irrelevant whether the new abilities represent a perceived improvement or degradation of the previous set of human traits.1 In other words, any deliberations on the body that imply the overcoming of a previous limit can be considered human enhancement.
As mentioned, human enhancement is still not well supported within the scientific community, so Jiankui’s announcement was received with much criticism. And there are several plausible reasons for the specific criticisms aimed at Jiankui’s experiment.
If criticism to human enhancement could be put in categories, then two types of concerns could be highlighted. The first one regards technical limitations. One reason why the manipulation of human cells as seen in this experiment is still largely rejected is that no gene editing tool has been developed that operates with a reasonable scope of safety. Therefore, mistakes and unforeseen events are possible,[10] including possible genetic problems early and later in life, off-target mutations and the replication of undesired results through generations.
The second type of objections concerns the human condition and human rights. In the one hand, it is needless to mention that interventions that seek negative results are both intrinsically problematic and unlikely. On the other hand, even with positive intentions,[11] editing the human genome can represent a philosophical crisis and can bring risks of serious violations to basic human rights. In this experiment, perfectly healthy embryos were put on elevated risk conditions for marginal gains and it is unclear if participants fully understood the conditions, thus impairing informed consent.1 The experiment also breached several other ethical principles by the World Medical Association for medical research involving human subjects.[12]
In other words, human enhancement seeks a better status than the previous one, but righteous motivations still do not guarantee the elimination of adverse outcomes. Dr. Jiankui tried to eliminate the embryo’s vulnerability to HIV infection, one of the diseases that is the target of a great deal of modern scientific research, but in doing so he may have exposed the embryos to potential cancer and other conditions. Unfortunately, however good it may be, the intention itself is not sufficient to rule out both the moral[13] and practical risks that come with accepting interventions in human cells.
Not only the practice, but even the semantic load of the word “enhancement” is problematic. In order to determine whether a change in the body results in a “better” status than the previous one, it is rather necessary to elaborate value judgments about the object to be modified (the human body) and about the change itself (the “improvement”). This judgment implies accepting as true that some or all people are not “good” enough and that certain traits should be more valued than others. Starting from this hypothesis, which traits should be considered of value? Who and what determines if something is a “quality?” What is a “good” body and why would someone not be “good” enough? And good enough for what, exactly? If, in fact, there are better conditions than others, does this authorize the acceptance of certain interventions in the human body, even if they occur in bodies of others and/or that are incapable of deliberating, like that of a fetus? Are there reasonable interventions and interventions that should not be done?1
It is clear that the variables “who,” “what,”[14] “when,”[15][16] “why,” and “how,”2 are all problematic. Who has the autonomy to intervene, who can undergo intervention (if at all), what is an improvement (and, by exclusion, what is not), when is the valid moment to make a modification, why is it necessary and how should be the procedure and regulation are just some of the issues to which there are currently not enough answers.
At the individual level, for example, it is difficult to point out the person who has the authority to decide on the modification in a child body, especially for deep and long-term modifications, a concern that may impede self-determination. For all situations, the psychological, social and philosophical impacts the individual will face after the new status should always be considered.[17]
At the structural level, in its turn, the social and economic orders are susceptible to the impacts of human improvement in many ways. Some problematic outcomes are eugenics, social exclusion, a labor market driven by individuals who seek self-improvement, objectification, the discard of undesired embryos, and increased prejudice against people with disabilities. In addition to these issues, the military potential of highly skilled armies could seriously affect the balance of power and interaction between international actors.[18]
It is true that many of these scenarios are far from reality, but some are existing problems that would only be increased in case gene editing in humans became popular: such as eugenics and prejudice. Some societies have had experience with state-run eugenics programs and fear its return. As for prejudice, it would be difficult, not to say paradoxical, to promote social inclusion of those whose patterns are targets of elimination, such as people with disabilities.
The menace of a philosophical crisis, starting with the moral status, cannot be disregarded. Perhaps the “speciesist” position, that is, to morally favor human beings over other species without sufficient justification to the special regard, would not be a greater problem than it is nowadays. However, genetic modifications that transcend human natural possibilities could weaken the concept of humanity itself or leave some people outside of it. With some people no longer considered to be people, it would be harder to guarantee that all human beings are right-holders of moral status.2
This has a direct effect on who should be subject to human rights. Article 6 of the Universal Declaration of Human Rights (UDHR) declares that everyone has the right to recognition everywhere as a person before the law.[19] With a moral status crisis, this protection is threatened. Some people could not only lose subjection to rights and obligations in other legal instruments, but also to UDHR itself, thus losing fundamental rights such as dignity, equity, liberty, security of person and so on.
Thus, the lack of responses to such serious questions justifies how hard it is to put human enhancement in practice. It takes too much responsibility to try the unknown, and it cannot simply be done with no regard to matters that can change society in such a profound way.
Advantages of gene editing and human enhancement
There are many grounds for apprehension, but if genetic editing was an entirely bad idea, then it would be easy to discard it. However, human enhancement advantages speak for themselves and counterbalance criticism.
A notable benefit is the chance to fight diseases more effectively. Further studies on genetics can reduce the technical limitations so far existing and bring cures. And if, as critics mention, fair motivations do not guarantee the elimination of adverse outcomes, on the other hand, to reject scientific development and leave problems as they are is not a solution either: fear is not a compelling argument for discarding innovation.
Furthermor, gene editing tools do promote a list of countless opportunities for the economy, education, law and more. People could be healthier, live longer, learn faster, need less sleep or even have their behaviour or emotions enhanced.2 For instance, an individual could have his or her biological stimulus towards morality modified, which may help reducing criminality rates.
Does the possibility of unequal access to bioenhancement justify hindering its advancement? There are situations where the community can benefit from individual improvements. This is the case with vaccination: with more people immune to a disease, the less likely it is to spread, and the less likely it is to reach the vulnerable.[20] Genetic editing in humans could have similar effects, reduce the demand for health systems and boost social responsibility.
Besides, people already try to improve themselves. Gene editing does not seem to mean a change in ends, but rather in means, so in a way it would be nothing new. With the broad definition of human enhancement, surgeries (both for health and aesthetics reasons), medication, vaccines, glasses, prostheses and even training are all attempts to overcome the natural limits of the human body or to reach a “better” status than the previous one. These common practices show legitimate and accepted purposes for the world, such as education and health, and genetic editing can be used in this favor.
This means that blaming gene editing on humans for the philosophical crisis is a narrowed perspective. What is the moral and symbolic difference between treating a disease and improving human fetuses so they do not have it? The debates on moral status and other issues need to be improved in order to indicate why treating is acceptable and why improving is reprehensible. At some point, it is not clear if there is a relevant moral distinction between them: be it means or ends, both can use artificial methods and have quite similar goals. Is the increase in life expectancy a result of treatment or enhancement? The World Health Organization (WHO) defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,”[21] and many means used by health sciences in order to achieve it can be said to promote human enhancement, if we take the broad definition. The same happens with education.
After all, gene editing might not represent such a threat, although it certainly hides an entirely new world yet to be explored. Solutions to structural problems and desirable results that are not yet possible can be found if this path is given a chance.
Conclusion
The Chinese experiment shocked the world with, basically, two implications: whether there is technology enough to interfere with the human genome and whether society is structurally prepared for this possibility.
Regarding technical matters, science is on its way to improve procedures and tools. Jiankui’s experiment is just another one among China’s initiatives[22] to test CRISPR on human beings, dating back at least to 2016. However, attempts to genetically modify humans are not new3 and only tend to increase worldwide with CRISPR on the spotlight.
As for the second topic, there is still much to be learned. Many people condemned the experiment due to grave ethical breaches, but some have seen it as a necessary example of boldness for overcoming what they see as insurmountable barriers for science progress. Jiankui admitted a feeling of strong responsibility to make a first step and serve as example for society to decide what to do next. And, despite the generalized criticism, this attitude was seen as reasonable for some.
If society divides opinions about the bond between ethical standards and scientific achievements, there is a clear lack of communication. Neither impairing science development or let it evolve with recklessness and no regard to morality are acceptable. But this does not need to be a deadlock: it is both possible and recommended to conciliate science and ethics. The most reasonable solution will come from an in-depth analysis of pros and cons and responsible research.
Nonetheless, this disconnect will not be bridged without input from the social sciences. Debates on bioethics, law and regulation, human rights and moral condition are urgent and need to be elucidated to the general public. It does not make sense to, at the same time, condemn gene editing and accept other forms of enhancement without clearly distinguishing what is right or wrong with each and why. Clarity does not mean to defend conceptual inflexibility, but rather to avoid contradictions.
Meanwhile, as long as people do not quite understand what is right or wrong with human enhancement and why, doubt will serve as an alibi for initiatives such as the Chinese experiment to exist – with or without oversight. Whether we are ready for it or not, society must prepare itself for the unknown future this type of science may lead to. Perhaps the coincidence of UDHR’s 70th birthday with the announcement of the experiment’s results serves to draw attention to how much is essential to discuss these and other topics.
For these reasons, we do not need to wait for the first genetically modified human being in the world to be. Perhaps the Pandora’s box is already open.
About the Author
Thais Aguiar is a law student at the Federal University of Pernambuco in Recife, Brazil. She currently researches the relationship between ethics, law, and technology, and was also an intern in Canada to research online dispute resolution.
Endnotes
[1] The New York Times. In China, Gene-Edited Babies Are the Latest in a String of Ethical Dilemmas
(2018), https://www.nytimes.com/2018/11/30/world/asia/gene-editing-babies-china.html (last visited Dec 13, 2018).
[2] The Wall Street Journal. Scientists Skeptical About Gene-Edited Baby Experiment (2018), https://www.wsj.com/articles/gene-edited-babies-experiment-raises-concerns-11544616000 (last visited Dec 13, 2018).
[3] The Guardian. World’s first gene-edited babies created in China, claims scientist (2018), https://www.theguardian.com/science/2018/nov/26/worlds-first-gene-edited-babies-created-in-china-cl aims-scientist (last visited Dec 14, 2018).
[4] Yoshizumi Ishino, Mart Krupovic & Patrick Forterre, History of CRISPR-Cas from Encounter with a Mysterious Repeated Sequence to Genome Editing Technology6 , 200 Journal of Bacteriology 1 (2018).
Thomas Gaj, Charles A. Gersbach & Carlos Barbas III, ZFN, TALEN, and CRISPR/Cas-based methods for genome engineering7 , 31 Trends in biotechnology 397, 397-405 (2013).
Wageningen University and Research. CRISPR-Cas – accurate DNA modification, https://www.wur.nl/en/Dossiers/file/CRISPR-Cas-accurate-DNA-modification.htm (last visited Dec 13, 2018).
[5] McGovern Institute for Brain Research at MIT. About CRISPR, https://mcgovern.mit.edu/CRISPR (last visited Dec 13, 2018).
[6] Le Cong et al., Multiplex genome engineering using CRISPR/Cas systems, 339 Science 1231143 (2013).
[7] Idem.
[8] Julian Savulescu, Nick Bostrom, Human enhancement, Oxford University Press on Demand 1-5 (2009).
[9] Stanford Encyclopedia of Philosophy. Human Enhancement (2015), https://plato.stanford.edu/entries/enhancement13 / (last visited Dec 14, 2018).
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[10] Bruce L. Webber, S. Raghu & Owain R. Edwards, Opinion: is CRISPR-based gene drive a biocontrol silver bullet or global conservation threat?, 112 Proceedings of the National Academy of Sciences 10565-10567 (2015).
[11] BBC News. He Jiankui defends ‘world’s first gene-edited babies’ (2018), https://www.bbc.com/news/world-asia-china-46368731 (last visited Dec 14, 2018).
The Guardian. World’s first gene-edited babies created in China, claims scientist (2018), https://www.theguardian.com/science/2018/nov/26/worlds-first-gene-edited-babies-created-in-china-cl aims-scientist (last visited Dec 14, 2018).
[12] World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. 20 Jama 2191 (2013).
[13] Rebecca Bennett, When Intuition is Not Enough: Why the Principle of Procreative Beneficence Must Work Much Harder to Justify Its Eugenic Vision19, 28 Bioethics 447-455 (2014).
I. Glenn Cohen, What (if anything) is wrong with human enhancement? what (is anything) is right with it?20 , 49 Tulsa L. Rev. 645 (2013).
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[14] Fritz Allhoff et al., Ethics of human enhancement: 25 questions & answers, 4 Studies in Ethics, Law, and Technology (2010).
[15] Julian Savulescu, Procreative beneficence: why we should select the best children, 15 Bioethics 413-426 (2001).
[16] William Simkulet, Intention and moral enhancement, 30 Bioethics 714-720 (2016).
Fritz Allhoff et al., Ethics of human enhancement: 25 questions & answers, 4 Studies in Ethics, Law, and Technology (2010).
[17] Frances M. Kamm, Is there a problem with enhancement?, 5 The American Journal of Bioethics 5-14 (2016).
[18] Patrick Lin, More Than Human? The Ethics of Biologically Enhancing Soldiers (2012), https://www.theatlantic.com/technology/archive/2012/02/more-than-human-the-ethics-of-biologically-e nhancing-soldiers/25321727 / (last visited Dec 14, 2018).
Allen Buchanan, Moral status and human enhancement, 37 Philosophy & Public Affairs 346-381 (2009).
[19] UN General Assembly, Universal Declaration of Human Rights, 10 December 1948, 217 A (III), available at: 29 http://www.un.org/en/universal-declaration-human-rights/ (last visited Dec 13, 2018).
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[20] TED Ideas. Why we must get vaccinated: to protect the people who can’t (2015), https://ideas.ted.com/why-we-must-get-vaccinated-to-protect-the-people-who-cant/ (last visited Dec 14, 2018).
[21] Preamble to the Constitution of the World Health Organization as adopted by the International
Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.
[22] Nature. CRISPR gene-editing tested in a person for the first time (2016), https://www.nature.com/news/crispr-gene-editing-tested-in-a-person-for-the-first-time-1.20988 (last visited Dec 14, 2018).