Genetic Engineering for Dummies: Should We Want DIY-Gene-Editing-Kits?
"With genetic engineering, we will be able to increase the complexity of our DNA, and improve the human race."
― Stephen Hawking
The technological transformation and scientific progress of both educational research and private companies is progressing rapidly and on an ever-increasing scale. Biomedical and genetic engineering are becoming economically viable for private biomedical companies. Indeed, the trend is moving toward human enhancement, and French essayist Paul Virilio resumed this contemporary tendency pretty well as he asked this simple question - "Atomic bomb yesterday, computer bomb today, and tomorrow.. genetic bomb?"
Human enhancement can be seen as all processes that range from plastic surgery and tissue engineering via the selection of wanted and unwanted genetic characteristics, genetic engineering and the implementation of neural implants, to human-machine systems and cyborgs. The goal is to increase human capabilities and so improve the human race.
From an economic point of view, some companies are thinking that biomedical technologies and genetic engineering could be profitable if made accessible for the greater number of people. So the idea of do-it-yourself (DIY) kits to experiment genetic engineering at home made its way. So former Nasa biochemist Josiah Zayner, who made this kind of kits available for the public in 2017. This led to a worldwide movement called 'biohacking' and led by individuals willing to try genes manipulations on themselves. This movement is close to transhumanists environments, which aim to achieve an enhanced humankind by using technologies.
In the same vein, Tristan Roberts was discovered by the public in the same year as he tried a new HIV-treatment on himself at home, provided by the biotech company Ascendance. Even though the molecules used in this treatment have not been tried on humans by that time, T. Roberts chose to proceed to the injection, since his regular HIV-treatment had undesirable side effects and he had trouble with his health insurance about the covering of the costs.
This case seems to raise several ethical and legal issues. Some may argue that anyone should be able to act in the way they please toward their own bodies. Others might question the impunity of private companies making money on desperate ill individuals. Moreover, this story showcases the complex relation between law and ethics. Is it ethically and/or legally acceptable to proceed to the self-injection of untested treatments at home? Moreover, is it permissible to make this kind of DIY-kits available for the public?
This article will try to highlight the complexity of this issue and try to respond to this problem. In this attempt, it will analyze both the legal and ethical arguments T. Roberts and Ascendance raised or would have possibly raised, and then deconstruct them by examining those of the opposite side. Because clarity over this topic can only be achieved if both sides are observed.
The Free Choice Of Treatment And The Right To Private Life
The treatment T. Robert was following did not provide him satisfaction as the side effects were too bothering. In this sense, if a promising treatment is accessible, why not take the chance. This liberal point of view is based on the idea that humans in a free and democratic society enjoy freedom on an individual level. According to the ethical triangle, a famous model that is used when an ethical dilemma is being faced, the former statement would be anchored on liberalism, since it is based on individual autonomy and self-determination.
In a legal perspective, everyone has a right to life. The European Convention on Human Rights ('ECHR') anchors this principle on a European level. This right materializes in practice in many shapes, as the right to health protection. The European Charter of Fundamental Rights (ECFR) provides for this right in its Article 35. European law therefore allows each individual to get access to medicine and if they are ill to an adapted treatment. This is made possible as the provisions of both ECHR and ECFR create an obligation for National States to guarantee this right. Out of these provisions in connection with Article 8 of the ECHR - providing for a right to respect for private and family life - results the principle of free choice of medical treatment.
The European Court of Human rights, however, regularly states in its jurisprudence that Article 8 is no absolute right and therefore that derogative provisions can be made. In fact, the Court grants a wide margin of appreciation to national States. The ruling Hristozov v. Bulgaria from 2012 reflects this well, as the Court had to rule on a medical case. According to the Court, it is possible to derogate to the provisions of Article 8 ECHR and there is no violation of the right to private and family life if a State refuses to allow terminally ill patients to use unauthorised, experimental drugs. This Court's ruling shows that the freedom of choice of treatment can be restricted for the greater good, which would be in this case the protection of society against the proliferation of untested experimental treatments. This communitarian view is supported by the idea that science is not deemed to be owned by individuals but is a common good that must be in favor of the greater number. In this sense, each individual must ask him/herself whether the intended action would still be intended if anyone would do it. This means that the validity of an action must be scrutinized by its ability to be acceptable to all in any circumstance. If it is not the case, then it means that this action is not worth being made.
Individuals should therefore be limited when necessary in order to enable humankind to subsist. This opinion might be in contradiction with the principle of self-determination, which results from the concept of human dignity.
Human Dignity And Self-Determination
Human dignity might be the supreme right of all human rights, as it is Article 1 of most Human Rights Law texts. Human dignity is an umbrella right from which the other rights resulted. However, human dignity means empowerment through the autonomy of individuals. Out of human dignity emerges the concept of bodily self-determination. Following the maxim 'my body, my choice', each individual should be able to act how they please on their own body. Indeed, the body is connected to one person and this person is the one who has to live in and with it. Therefore, the law also provides for an objective protection of the human body, like Article 16 of the French Civil Code provides for the principle of inviolability of the human body.
The paradox lying within human dignity is that it is also a constraint that can be used against one's will. France based its famous ruling about Human Dignity on the argument that Human Dignity is a common good and therefore can be used against individuals to protect them against themselves. In the context of DIY-treatments, it means that society and in particular the State could limit individuals in their freedom to test an experimental treatment on themselves in order to protect them against their own dehumanizing actions. Therefore, this second dimension of Human dignity protects individuals against dehumanizing treatments, even though the treatment is self-made. This can be assimilated as a paternalistic and/or conservative view. However, it is still very efficient to preserve the original meaning of Human Rights that they are a common good. Indeed, if the future of humankind is at stake, it seems legitimate to restrain some in order to protect others.
Additional literature:
Kant, Emmanuel. 'Groundwork for the Metaphysics of Morals', 1785 .
Koops, B.-J-. 'Engineering the Human', p. 165, 2013.
Mill, John Stuart. 'On Liberty' , 1859.
van Beers, Britta ; Davis, Gareth. 'Human Dignity: Bioethics at the beginning and end of life' .
Case law:
Conseil d'État, 'Commune de Morsang-sur-Orge', 27.10.1995.
Legal sources:
Article 16 Code civil, 'Principe d'indisponibilité du corps humain'.