What criteria will determine an ethical use of human genome editing?

Bioethical Criteria 

Although we have previously established the legal frameworks for genetic editing of human embryos, are not sufficient to elucidate or resolve all conflicts ethical. What is required by law is only one of the dimensions of acting ethically and Ethics often dictates actions that go beyond what is required by law. From In fact, it is neither possible nor desirable for the law to cover the whole spectrum of the moral life of individuals or societies, as history has taught us that the law may require actions that are unethical and that ethical actions may be illegal. Bioethics is the branch of ethics dedicated to providing the principles for more appropriate behaviour of the human being with respect to life, both and non-human life (animal and plant), as well as the environment in which they can acceptable conditions for the same. Not everything that is technically possible is ethically and legally acceptable. Therefore, as well as than many other biotechnological and scientific discoveries throughout the history, this procedure resulting from genetic engineering raises ethical questions of The following are some of the most important ones:

Playing God?

Armies of super-soldiers immune to chemical weapons, babies who are better looking, smarter and more resistant to disease, sportsmen who won't get tired and astronauts who are genetically modified so that they can resist the lack of gravity. These are just a few examples of what can be achieved in the future with CRISPR. 35 International Bioethics Committee (IBC). 2015. "Report of the IBC on updating its reflection on the Human Genome and Human Rights". UNESCO, Paris. For many, the evolution of human beings must take place without any intervention by us as it is a natural phenomenon or process, such as as explained in the Darwinian theory of natural selection, since there is the fear that some researchers will start playing God and try to reformulating the genetic code of human cells, mainly in the because they would be transmitted to the next generations and could give rise, in less in theory, to science fiction scenarios.

Safety and precautionary principle

One of the problems with new technologies is security. In the area of research, a balance must be struck between scientific progress and security. On the basis that the human genome is "the heritage of mankind", all necessary measures should be taken to preserve it even if it is the result and consequence of natural evolution. Harris, John. 2007. "Enhancing evolution. Princeton University Press . Universal Declaration on the Human Genome and Human Rights, art. 1: "The human genome is the basis of the fundamental unity of all members of the family and the recognition of their intrinsic dignity and diversity. In a symbolic sense, the human genome is the heritage of humanity".

In 2005, the UNESCO World Commission provided a working definition for the precautionary principle. It noted that where human practices may cause "morally unacceptable damage that is scientifically plausible but uncertain", the necessary measures proportionate to the severity of the potential damage shall be taken before it occurs to prevent or reduce it, and shall take into account the moral implications of both action and inaction. This unacceptable damage consists of:

-  Threat to human health or life,

-  Seriously and effectively irreversible, or

- Unfair to present or future generations, or

- Imposed without due regard to the human rights of those affected.

The judgement of plausibility must be based on a permanent scientific analysis of so that the measures resolved can be reconsidered. The choice of action should be the result of a participatory process. These concerns had previously been estimated by UNESCO in three sectoral declarations: the Universal Declaration on the Human Genome and Human Rights, the Declaration on the Responsibilities of the Current Generations to Future Generations (both 1997) and International Declaration on Human Genetic Data (2003)

Genetic Discrimination

The term discrimination means giving unequal treatment to a person or a group for different reasons, so it could be said that the right to discrimination derives from the right to equality. While equal treatment that formally comply with the principle of equality, may also be discriminatory and unequal treatment may not be. Article 6 of Law 14/2007 (LIB) provides for this:

"No one shall be subject to any discrimination on the basis of his or her characteristics genetic. Nor may a person be discriminated against because of his or her refusal to to undergo genetic testing or to give consent to participate in a biomedical research or to donate biological materials, in particular in relation to the medical care benefit to which he is entitled".

In addition to the previous law, the notion of non-discrimination has been included in all declarations on human rights (ECHR or DBDH), as well as in our Constitution and in the Criminal Code. The legislator has had the will to protect equality as an individual right, however, it draws attention to the permissiveness in relation to selection behaviour justified by virtue of their suitability for the elimination of a "tare". Indeed, there is a growing academic, political and legislative debate around the possibility of manipulating people's genetic information for the purpose of discrimination

Distributive justice. Marketing

There is no longer any doubt about the potential benefits that genetic editing in human embryos can bring. This scientific research is usually carried out in countries with sufficient means to carry them out and can increase differences with less developed countries where scientific progress is not a of their highest priorities and cannot enjoy the results obtained. At In these cases, we have to take into account the distributive justice that, according to John Rawls, is achieved when all individuals are favored without regard to their particularities, giving priority to freedom and equality.

The CRISPR technique, as we have explained previously, is cheap and simple. In fact, you can buy equipment on the internet for 140 dollars to edit bacteria genes at home using this method ("DIY Bacterial Gene Engineering CRISPR Kit "), or intermediate or final components, for example, for 60 dollars. It is putting the power of scientific engineering into the hands of many more scientists. This trend could lead to an explosion of innovation or dangerous uncontrolled experiments by amateurs. However, human embryonic genetics techniques are resource-intensive and some health systems cannot afford them without have access to the desired patented applications, which could mean restrictions and high costs by limiting the use of the genome to those who could afford it

Necessity or consumerism?

Parents who have access to genetic selection and editing techniques will have children whose abilities are likely to be greater than those would result from the "natural lottery" but will be theirs in the sense that they will the genes of both. Many think that they would consent to selection against diseases or disabilities, but not to improve what is normal. Nevertheless, there is no clear line between disability recruitment and selection of positive features. 

 The misapplication of research to others camps: weapons of mass destruction:

In these times of conflict and international attacks in which we live, concern arises over the misuse of new technological advances, especially genetics. States and international bodies should therefore limit their potential for use in other more dangerous areas. This is known as the "dual-use" dilemma, the possibility of using the results of well-intentioned scientific research for beneficial or harmful purposes. In most debates on dual-use research, there have been mainly involving scientists and security experts rather than specialists in ethics. It is vital that there are more contributions from the field of ethics in the discussions on the management of dual-use research.

In February, James R. Clapper, director of U.S. National Intelligence stated in the report "Worldwide Threat Assessment of the US Intelligence Community" to genomics publishing as a weapon of mass destruction along others, such as chemical weapons in Syria and Iraq or nuclear weapons programmes and missiles from North Korea. He claims that the low cost, wide distribution, the passage accelerated the development of this dual-use technology and the misuse of either or intentional, could lead to economic consequences and national security in a broad sense46. Advances in genomic publishing in 2015 have forced high-profile groups in the United States and European biologists to question the lack of regulation of human germline editing, which could generate hereditary genetic changes.

Eugenics

When we think of eugenics, we think of the racial cleansing and killings of the Nazi Holocaust. But if genetic editing of human embryos is helping people avoid the risk of transmission of harmful genes to their offspring, then is it eugenics? In 1883, Francis Galton first coined the term eugenics to refer to "the science that deals with all the influences that improve the innate qualities of a race; therefore, those that develop the qualities most advantageously". That is, the study of the factors that could perfect or diminish the racial qualities of future generations, both physical and intellectual.

Eugenics has a double aspect:

- Negative eugenics: eliminating or suppressing those genetic characteristics that are not desirable to avoid "defective" offspring. This type of eugenics was very popular in Nazi Germany, as well as in other countries such as United States, Canada, Finland, Norway or United Kingdom. Sterilization was considered to be an instrument of great relevance.

- Positive Eugenics: to promote genetic, physical and intellectual qualities that are socially desirable. I sought to improve the species by control of reproduction in the population and through marriages between people with desirable characteristics. 

What seemed to be a technical or moral issue in the past is now very is likely to be met soon and consumers or parents if they would like to use germline modification to practice an in their children's genes. 

Refererences:

• National Academies of Sciences, E., Medicine,. (2017). Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press.
• The Hinxton Group. (2015). Statement on Genome Editing Technologies and Human Germline Genetic Modification. Retrieved from http://www.hinxtongroup.org/Hinxton2015_Statement.pdf
• Araki, M., & Ishii, T. (2014). International regulatory landscape and integration of corrective genome editing into in vitro fertilization. Reprod Biol Endocrinol, 12, 108. doi:10.1186/1477-7827-12-108
• Lanphier, E., Urnov, F., Haecker, S. E., Werner, M., & Smolenski, J. (2015). Don't edit the human germ line. Nature News, 519(7544), 410. doi:10.1038/519410a
• Hampton, T. (2016). Ethical and Societal Questions Loom Large as Gene Editing Moves Closer to the Clinic. JAMA, 315(6), 546-548. doi:10.1001/jama.2015.19150
• Savulescu, J., Pugh, J., Douglas, T., & Gyngell, C. (2015). The moral imperative to continue gene editing research on human embryos. Protein Cell, 6(7), 476-479. doi:10.1007/s13238-015-0184-y
• Ishii, T. (2017). Germ line genome editing in clinics: the approaches, objectives and global society. Brief Funct Genomics, 16(1), 46-56. doi:10.1093/bfgp/elv053
• Park, A. (2016). UK Approves First Studies Using New Gene Editing Technique. Time Health.
• Araki, M., & Ishii, T. (2014). International regulatory landscape and integration of corrective genome editing into in vitro fertilization. Reprod Biol Endocrinol, 12, 108. doi:10.1186/1477-7827-12-108
• Lanphier, E., Urnov, F., Haecker, S. E., Werner, M., & Smolenski, J. (2015). Don't edit the human germ line. Nature News, 519(7544), 410. doi:doi:10.1038/519410a
• The Hinxton Group. (2015). Statement on Genome Editing Technologies and Human Germline Genetic Modification. Retrieved from http://www.hinxtongroup.org/Hinxton2015_Statement.pdf
• National Academies of Sciences, E., Medicine,. (2017). Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press.
• Callaway, E. (2016). UK scientists gain licence to edit genes in human embryos. Nature News, 530(7588), 18. doi:doi:10.1038/nature.2016.19270
• Cyranoski, D., & Reardon, S. (2017). Chinese scientists genetically modify human embryos. Nature News. doi:doi:10.1038/nature.2015.17378