A Q methodology study on divergent perspectives on CRISPR-Cas9 in the Netherlands.

BACKGROUND: CRISPR-Cas9, a technology enabling modification of the human genome, is developing rapidly. There have been calls for public debate to discuss its ethics, societal implications, and governance. So far, however, little is known about public attitudes on CRISPR-Cas9. This study contributes to a better understanding of public perspectives by exploring the various holistic perspectives Dutch citizens have on CRISPR-Cas9. METHODS: This study used Q methodology to identify different perspectives of Dutch citizens (N = 30) on the use of CRISPR-Cas9. The Q-sort method aims at segmenting audiences based on the structural characteristics of their perspectives. Participants individually ranked 32 statements about CRISPR-Cas9 and discussed their rankings in small groups. By-person factor analysis was performed using PQMethod. Participants' contributions to the discussions were used to further make sense of the audience segments identified. RESULTS: Five perspectives on CRISPR-Cas9 were identified: (1) pragmatic optimism (2) concerned scepticism; (3) normative optimism; (4) enthusiastic support; and (5) benevolent generalism. Each perspective represents a unique position motivated by different ranking rationales. Sorting rationales included improving health, preventing negative impacts on society, and fear of a slippery slope. Overall, there is broad, but not universal support for medical uses of CRISPR-Cas9. CONCLUSIONS: Research on CRISPR-Cas9 should prioritise the broadly supported applications of the technology. Research and public debates on CRISPR-Cas9, its uses, its broader implications, and the governance of CRISPR-Cas9 are recommended. A discourse that includes all perspectives can contribute to the embedding of future uses of CRISPR-Cas9 in society. This study shows that Q methodology followed by group discussions enables citizens to contribute meaningfully to discourses about research.

[The crispr / cas9 techniques applied to human genetic enhancement: a biotechnological, anthropological-philosophical and legal dialogue]. / Las técnicas crispr/cas9 aplicadas al mejoramiento genético humano: un diálogo biotecnológico, antropológico-filosófico y jurídico.

The CRISPR editing method is revolutionary. This technique opens the possibility of countless operations in the genome of living beings. However, the risks are high and, in some cases, unpredictable. Therefore, based on an anthropology that recognizes the human person with an inherent dignity that includes the body, this article intends to propose bases for a regulation capable of facing the challenge of CRISPR, especially, given the possibility of confusing its therapeutic resource with the eugenics, also before the imminent risk of unleashing unforeseen consequences such as mutations, malformations and side effects that could be devastating for human life.

[From transgenesis to gene edition. Bioethical and applied considerations]. / De la transgénesis a la edición génica. Aplicaciones y consideraciones bioéticas.

Transgenesis is a parcel of biotechnology that allows the introduction of genetic information not proper to the genome of living beings, apart from the mechanisms of natural genetic exchange. This made possible to address important applications in bacteria, animals and plants with significant benefits in health, food and environmental aspects. Since its origin, the production of genetically modified organisms (GMOs) caused some controversy due to the possible negative influence of these organisms or their derived products on health and the environment. Over time, genetic modification techniques have renewed, giving way to others of greater precision, simplicity and safety. Currently the CRISPR-Cas9 technique is widely used, which allows to edit, modify or eliminate specific DNA sequences, with multiple applications in the same fields of transgenesis, but adding greater simplicity, security and lower cost. This work presents the main techniques, applications and ethical implications of using these methods and their perspectives in an ever-evolving world. The bacteria for obtaining products of pharmacological interest, new varieties of cultivated plants of higher production, more resistance to growth limiting agents and better nutritional quality and domestic animals modified genetically, offer a set of advantages needed to address the global challenges that affect the lives of many people around the world.

Islamic Perspectives on CRISPR/Cas9-Mediated Human Germline Gene Editing: A Preliminary Discussion.

The recent development of CRISPR/Cas9 technology has rekindled the ethical debate concerning human germline modification that has begun decades ago. This inexpensive technology shows tremendous promise in disease prevention strategies, while raising complex ethical concerns about safety and efficacy of the technology, human dignity, tampering with God's creation, and human genetic enhancement. Germline gene editing may result in heritable changes in the human genome, therefore the question of whether it should be allowed requires deep and careful discussion from various perspectives. This paper explores Islamic perspectives on the concerns raised and highlights the ethical principles in Islam that should be taken into consideration when assessing the permissibility of CRISPR/ Cas9-mediated human germline gene editing. As argued in this paper, human germline gene editing would be considered lawful for medical purpose under certain conditions. It should not be applied on humans until the safety and efficacy issues are resolved. Robust ethical guidelines and strict regulations are necessary to preserve human dignity and to prevent premature and misuse of the technology. Maqasid al-shariah's principles of preservation of human life, lineage, and dignity and 'preventing harm takes precedence over securing benefit' are among the guiding principles in assessing the permissibility of CRISPR/Cas9-mediated human germline editing from an Islamic perspective. Further discussions are important to address the controversies as well as to explore the related ethical principles.

Using the therapy and enhancement distinction in law and policy.

In a first major study, the UK's Royal Society found that 76% of people in the UK are in favour of therapeutic germline genomic editing to correct genetic diseases in human embryos, but found there was little appetite for germline genomic editing for non-therapeutic purposes. Assuming the UK and other governments acted on these findings, can lawmakers and policymakers coherently regulate the use of biomedical innovations by permitting their use for therapeutic purposes but prohibiting their use for enhancement purposes? This paper examines the very common claim in the enhancement literature that the therapy v enhancement distinction does little meaningful work in helping us think through the ethical issues, a claim that has significant implications for these lawmakers and policymakers who may wish to regulate genomic editing techniques to reflect the findings of this important study. The focus of this paper is on germline genomic editing as one of the main themes in this special issue.

Great minds think different: Preserving cognitive diversity in an age of gene editing.

It is likely that gene editing technologies will become viable in the current century. As scientists uncover the genetic contribution to personality traits and cognitive styles, parents will face hard choices. Some of these choices will involve trade-offs from the standpoint of the individual's welfare, while others will involve trade-offs between what is best for each and what is good for all. Although we think we should generally defer to the informed choices of parents about what kinds of children to create, we argue that decisions to manipulate polygenic psychological traits will be much more ethically complicated than choosing Mendelian traits like blood type. We end by defending the principle of regulatory parsimony, which holds that when legislation is necessary to prevent serious harms, we should aim for simple rules that apply to all, rather than micro-managing parental choices that shape the traits of their children. While we focus on embryo selection and gene editing, our arguments apply to all powerful technologies which influence the development of children.

Is selecting better than modifying? An investigation of arguments against germline gene editing as compared to preimplantation genetic diagnosis.

BACKGROUND: Recent scientific advances in the field of gene editing have led to a renewed discussion on the moral acceptability of human germline modifications. Gene editing methods can be used on human embryos and gametes in order to change DNA sequences that are associated with diseases. Modifying the human germline, however, is currently illegal in many countries but has been suggested as a 'last resort' option in some reports. In contrast, preimplantation genetic (PGD) diagnosis is now a well-established practice within reproductive medicine. Both methods can be used to prevent children from being born with severe genetic diseases. MAIN TEXT: This paper focuses on four moral concerns raised in the debate about germline gene editing (GGE) and applies them to the practice of PGD for comparison: Violation of human dignity, disrespect of the autonomy and the physical integrity of the future child, discrimination of people living with a disability and the fear of slippery slope towards immoral usage of the technology, e.g. designing children for specific third party interests. Our analysis did not reveal any fundamental differences with regard to the four concerns. CONCLUSION: We argue that with regard to the four arguments analyzed in this paper germline gene editing should be considered morally (at least) as acceptable as the selection of genomes on the basis of PGD. However, we also argue that any application of GGE in reproductive medicine should be put on hold until thorough and comprehensive laws have been implemented to prevent the abuse of GGE for non-medical enhancement.

[Genetic edition and theological ethics]. / Reflexiones ético-teológicas ante la edición genética.

This paper tries to look forward to the incoming ethical challenges related with genetic editing. It begins with contextualizing genetic edition within the specific nature of modern technology. Afterwards it presents the contrast between natural beings and artifacts that sheds light for answering the question about the real possibility of replacing natural beings, as they are, with technologically projected living beings. In the third place, after acknowledging the scarce attention given by contemporary theology to technology, it shows the convergence of the Christian concept of creation with the respect for balance in nature, as most part of the contemporaty ecological sensibility upholds. Building on this common ground it shows that the Christian attitude towards technology is not technofobical but the integration of technology -a central element of contemporary culture- with nature, accepting the limitation of any natural being including mankind. In this way, vulnerability, as a visible consequence of this finitude, is the very attribute of human beings that makes ourselves equal and requieres recongnition of our common dignity, way over the idea of acquiring an ideal perfection through technology, even if it was accesible to all.

[Enhancement can do harm]. / Les pièges de l'amélioration - Chroniques génomiques.

Inactivation of the CCR5 gene by CRISPR editing in human embryos, as recently attempted in China, was touted as a positive change for the babies involved since it was expected to impart resistance to HIV infection. However, it turns out that the absence of CCR5 is not neutral but actually decreases fitness, as shown by survival analysis of population data in the UK biobank. This underlines the pitfalls of genetic enhancement, and emphasizes that any germline modification must be preceded by in-depth studies to exclude unforeseen negative effects. ‡.

An ambiguity in Habermas's argument against liberal eugenics.

In his book The future of human nature, Jürgen Habermas argues against a scenario of liberal eugenics, in which parents are free to prenatally manipulate their children's genetic constitution via germline interventions. In this paper, I draw attention to the fact that his species-ethical line of argument is pervaded by a substantial ambiguity between an argument from actual intervention (AAI) and an argument from mere controllability (AMC). Whereas the first argument focuses on threats for the autonomy and equality of prenatally modified persons, the second argument takes all human beings, whether they have been modified or not, into account. Hence, when invoking Habermas in these debates, bioethicists need to consider carefully which argument they are referring to.

Yesterday's Child: How Gene Editing for Enhancement Will Produce Obsolescence-and Why It Matters.

Despite the advent of CRISPR, safe and effective gene editing for human enhancement remains well beyond our current technological capabilities. For the discussion about enhancing human beings to be worth having, then, we must assume that gene-editing technology will improve rapidly. However, rapid progress in the development and application of any technology comes at a price: obsolescence. If the genetic enhancements we can provide children get better and better each year, then the enhancements granted to children born in any given year will rapidly go out of date. Sooner or later, every modified child will find him- or herself to be "yesterday's child." The impacts of such obsolescence on our individual, social, and philosophical self-understanding constitute an underexplored set of considerations relevant to the ethics of genome editing.

Genome Modifying Reproductive Procedures and their Effects on Numerical Identity.

The advantages and risks of a number of new genome modifying procedures seeking to create healthy or enhanced individuals, such as Maternal Spindle Transfer, Pronuclear Transfer, Cytoplasmic Transfer and Genome Editing, are currently being assessed from an ethical perspective, by national and international policy organizations. One important aspect being examined concerns the effects of these procedures on different kinds of identity. In other words, whether or not a procedure only modifies the qualities or properties of an existing human being, meaning that merely the qualitative identity of this single individual is affected, or whether a procedure results in the creation of a new individual, meaning that a numerically distinct human being would have come into existence. In this article, the different identity arguments proposed, so far, are presented with respect to these novel reproductive procedures. An alternative view is then developed using the Origin Essentialism argument to indicate that any change in the creative conditions of an individual such as in his or her biology but also the moment in time, and the three dimensions of space, will have a numerical identity effect and bring into existence a new individual who would not, otherwise, have existed. Because of this, it is concluded that a form of selection may have taken place in which a preference was expressed for one new possible individual instead of another, based on some frame of reference. This may then mean that a selection between persons has occured  contravening the European Union Charter of Fundamental Rights which was ratified in 2000.

Enhancement, hybris, and solidarity: a critical analysis of Sandel's The Case Against Perfection.

This article presents a critical analysis of the views of Michael Sandel on human enhancement in his book The Case Against Perfection (2007). Sandel argues that the use of biotechnologies for human enhancement is driven by a will to mastery or hybris, leading to an 'explosion of responsibility' and a disappearance of solidarity. I argue that Sandel is using a traditional concept of solidarity which leaves little room for individual differences and which is difficult to reconcile with the modern trend towards individual autonomy and cultural heterogeneity. With reference to the sociology of Giddens, I argue that the 'explosion of responsibility' can be considered an expression of the insecurity in modern society and the need for reflexivity in personal and social life. I argue that the need for reflexivity is a driving social and cultural force behind the interest in human enhancement, and that this trend can go together with a commitment to take care of the needs of others. I agree with Sandel that there is a risk that human enhancement may develop into 'hybris', particularly when enhancement is driven by scientism and a naturalist reduction of human values to neurological processes. Enhancement based on scientism will threaten solidarity defined by Honneth as an interactive relationship aimed at the mutual recognition of individual identities in relation to a shared value horizon. I will call for a reflective approach in which human enhancement technologies are explored in the context of a 'system of reference'. Such a reflective approach will help to protect against the hybris of scientism and to maintain solidarity with vulnerable groups.

Moral reasons to edit the human genome: picking up from the Nuffield report.

In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing (HGE). The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely 'morally permissible', many instances of genome editing will be moral imperatives.

Gene Editing, Enhancing and Women's Role.

A recent article on the front page of The Independent (September 18, 2015) reported that the genetic 'manipulation' of IVF embryos is to start in Britain, using a new revolutionary gene-editing technique, called Crispr/Cas9. About three weeks later (Saturday 10, October 2015), on the front page of the same newspaper, it was reported that the National Health Service (NHS) faces a one billion pound deficit only 3 months into the new year. The hidden connection between these reports is that gene editing could be used to solve issues related to health care allocation. Improving the health of future generations might coincide with public health goals; it might improve the health of individuals and communities, and, if successful, might be seen as a public good. However, enhancing future generations will require In Vitro Fertilisation and Pre-implantation Genetic Diagnosis. Remarkably, the necessary involvement of women in an enhancing scenario has not been discussed by its proponents. The present discourse on moral obligations of future generations, although not referring to women, seems to imply that women might be required, morally, if not legally, to reproduce with IVF. Enhancing future generations will be gendered, unless the artificial womb is developed. These are challenging issues that require a wider perspective, of both women and men. Despite the lack of a unified feminist conclusion in the discussions about the merits and risks of human genome modification, there is an urgent need to clarify the role of women in this scenario.