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The Rise and Risks of CRISPR/Cas9: Cultural and Ethical Perspectives on the New Gene Technology

Research project The aim of this project is to initiate research in the humanities and philosophy on the debate and risks of the new gene technology known as CRISPR/Cas9.

CRISPR/Cas9 is looked upon as one of the greatest breakthroughs in the life sciences in our lifetime. Since it may be possible to utlize CRISPR/Cas9 as a gene therapy, it has the potential to revolutionize medicine and perhaps also to improve ordinary human beings. This potential leads to both expectations and fear and it gives rise to a number of severe questions regarding cultural values, risks and ethics. These questions need to be taken serious and be analysed in systematic ways by scholars in democratic societies. This project will contribute to this important task.

Project overview

Project period

2017-07-01 2020-06-30

External funding

Stiftelsen Marcus och Amalia Wallenbergs Minnesfond, 2017-2020: SEK 4,000,000

Research subject

Praktisk filosofi, Idé- o lärdomshistoria, Teknik och kultur

Project description

The discovery of the biochemical system CRISPR/Cas9, which now comprises the basis of a general technique for the study and modification of the genetic material of bacteria and plants as well as mammals, is considered one of the greatest breakthroughs in the life sciences in our lifetime. Research adopting this technique has spread rapidly throughout the world, fueling grand expectations about what it may lead to in practice, both within agricultural science, in the form of selective breeding, and human medicine, in the form of gene therapy. For example, research is currently being conducted in the hope of aiding in the treatment of HIV, haemophilia, sickle cell anemia and various forms of cancer. Thus far, research intent on developing safe, quality gene therapy has been pursued for decades without medical success, but the situation now seems radically transformed, thanks to CRISPR/Cas9.

Insofar as medicine is concerned, it is also speculated that in time, serious illnesses can be prevented or completely eradicated through CRISPR/Cas9 gene therapy in combination with IVF. Editing the ordinary cells of a human being suffering from a genetic disorder via gene therapy is however one thing; causing changes in a germ cell or embryo, so that it is inherited by coming generations, is quite another and significantly more controversial. Whether legislation drafted before the advent of CRISPR/Cas9 ought to be reviewed and possibly amended is an open question today.

A further controversial aspect is the possibility of improving or refining perfectly normal human conditions with the help of CRISPR/Cas9. Perhaps adjustments in the genome might eventually lead to more intelligent, more productive or more beautiful human beings. This thought is also not new, stretching all the way back to ancient Athens and Plato’s vision of creating ideal citizens through meticulous matchmaking. It is however more readily and ominously associated with the early 20th century’s racial hygiene, whereby scientists posited the possibility of refining entire nations through a combination of positive and negative eugenics. During the interwar period, an early variant of hormone therapy that can be seen as a precursor to latter-day gene therapy was developed as well. Today the dream is no longer to enhance human beings for the sake of the nation or the race; instead, focus is trained on the individual. But the very idea inflames passions since it is associated with both transhumanist visions of a “new man” (for those who can afford it) and a dark, racist past, whose purpose was to breed supermen. In other words, the line between what should and should not be done with new gene technology has yet to be drawn. Some see this possibility as a sign of progress and evolution, others as a slippery slope that will be the very undoing of mankind.

This state of affairs, together with disputes about scientific priority and rights to the patent (which effects commercialization and by extension, access to the new technology), has led to an intense and extensive debate about CRISPR/Cas9 both within and outside academia. Three prominent themes have been identified: The first concerns academic priorities and the right to ownership of the findings: Who are the key researchers behind CRISPR/Cas9 and who owns the right to its patent? The second theme consists in the hopes and expectations for medical innovation raised by CRISPR/Cas9: What new opportunities, in terms of greater health or human enhancement, can CRISPR/Cas9 offer? The third theme concerns risks and negative side effects and social consequences: What are the risks and ethical issues that CRISPR/Cas9 might give rise to and how should these risks be regulated (if permitted at all)? Of these themes, it is the third that has received the most attention globally.

To these three major themes, a fourth, minor theme may be added, dealing with scepticism toward the most far-reaching speculations, advocating humility in the face of the complexity of the issues at stake, and possibly some degree of envy toward the resounding success of CRISPR/Cas9: Is the scientific, medical, financial, and ethical hype surrounding CRISPR/Cas9 in fact seriously exaggerated, a hypothetic bubble? Such doubts have given rise to a form of sarcastic “anti-hype”, as exemplified by the satirical Twitter hashtag #crisprfacts, online since the summer of 2015, poking fun at the presumed omnipotence of the new gene technology.

The over-arching aim of the proposed project is to initiate research in the humanities and philosophy into this complex set of problems. Although the four themes identified above are interrelated and jointly comprise “the common perception of CRISPR” and forming the basis of public trust or distrust, the proposed project will primarily focus on the second and third themes. The project will also limit itself to the field of medicine. The object is to add new knowledge to our respective academic disciplines, but also to provide relevant knowledge to concerned researchers, regulators, and the public at large. The research questions the project will focus on are as follows.

1) What ideas, arguments, values, and emotions have been expressed in relation to the possibilities, risks, and ethical issues in the scientific and public debates about CRISPR/Cas9? To what extent can parallels be drawn to earlier debates concerning new techniques in medicine or biotechnology and what can we learn from these earlier debates?

2) How can we, against the background of the scientific and public debates on CRISPR/Cas9 and the philosophical literature on the ethics of risk, theoretically best account for the ethical complexity of the issues at hand, in a way that can form the foundation for an ethical framework?

Answers to our two research questions will be sought in two separate but interrelated studies grounded in two different but complementary research traditions: the History of Science and Ideas, and Philosophy. The first study, "Expectations and fear: An analysis of the international debate on possibilities and ethical problems regarding CRISPR/Cas9", is an empirical analysis of discourses on CRISPR/Cas9 conducted in periodicals, the daily press and social media. The second study, "Towards an Ethical Framework for CRISPR/Cas9", which comprises the main part of the project, consists in a philosophical study of the ethical dimensions of CRISPR/Cas9.