Strict adherence to ethics in research is essential to making societies fairer and safer for all.

Essay

Your Name: PHILOGENE Bernadin

Name of School or Institution: Tomsk State University

Human Development: Genetics, Neurosciences, and Psychology

Course Number and Name: ELSIR AND AWP

Instructor: Fatos Selita,

Date: 03/01/2022

Research is one of the main functions of research organizations or universities. However, the realization of this function, in strict respect of ethics, should contribute to the development of societies while making them fairer and safer for all. It should be a responsible act towards ourselves and others because our actions today should not negatively impact or compromise the existence of the future generation. For this, the university environment should rely on values, norms, and fundamental moral virtues constituting university ethics as a basis for research ethics in order to moralize university research. This would allow a better valorization in the diffusion of scientific and technical culture. In the meantime, the issues of research ethics are becoming increasingly important in the practice of research worldwide. However, in this essay the focus will be on genomic research, trying to cover the main ethical and legal issues related to scientific research, including data processing and protection, genetic discrimination, etc.

Since the completion of the human genome in 2003, a project that allowed us to understand the structure of the genome, gene sequencing technologies has become more efficient and less expensive. Genome sequencing, whether complete or partial, is an undeniable scientific advance that has created a new world that requires new rules and requirements.

Certainly, this field of behavioral genetics has generated a host of moral and social concerns virtually since its inception[1][2]. With the considerable increase in the speed of genome sequencing that is now called "very high throughput" sequencing. Secondly, the reduction of time and the lowering of costs for the realization of the "Human Genome" project are enormous: what had required thirteen years of work and an investment of 3 billion dollars during the process, around the year 2000, is now achievable in one hour for less than 1,000 euros. Consequently, the development of bioinformatics and of banks that store and analyze genetic data on a large scale favors the development of predictive genetics: genetic tests aimed at detecting in an individual the risk of monogenic diseases (due to the alteration of a specific gene) Thus, it has become easier to explore the genome of an individual and identify genes or sequences responsible for certain diseases.

Today, genomic data is a tremendous resource for improving people's lives, including health, education, and justice. And the value of genomic data is also being recognized by the commercial world, such as pharmaceutical, insurance, marketing, and data processing companies. The current value of the genomic data market is difficult to assess, but several indicators already suggest that it is high and growing. They have created a world where: information about an individual's past, present, and future can be extracted from DNA. This revolution heralds a new era and our entry into the digital age has brought rapid and profound changes and upheavals in many ways to our individual and collective lives. Consequently, it reveals new social challenges that we must face. For this reason, since 2015, research has begun to address the potential misuse of genetic data, such as privacy issues, including electronic health records, genetic testing in clinical settings, identification of individuals from anonymized data, and data processing and sharing. Because technologies such as human genome editing, for example, have the potential to cure serious diseases or save lives, but could also generate new forms of social inequality and discrimination in various fields such as health, education, immigration, etc., they could lead to new forms of discrimination. All this could lead to unforeseen negative consequences for humanity in the long run.

It is shared that until now our understanding of genetic inheritance has been limited, leading to erroneous views about genetic differences between groups and group discrimination. Group discrimination is based on many characteristics, including color, nationality, ethnicity, religion, class, caste, gender, and other existing or perceived differences[3]. Added to this is additional detailed personal information that is collected from many sources, such as cell phones, hospitals, bank cards; emails, videos, audio, smart devices, stock market data, financial transactions, social media, etc. forming Big Data systems. This information is shared internationally between many powerful private and state organizations, and the use of this information is a very profitable gold mine for these organizations and industries and can play a determining role in the discrimination process. You may not be hired, given a scholarship, health care, etc. based on your genetic information.

At this rate, in order to adapt to these different realities, ethics does not seem to be enough to protect the man in his private life and to prevent him from being discriminated against in any way related to his genetics. Because ethics, as a system of moral principles that define what is good or bad for the conduct of individuals in society, seems a little individualizing and reductionist. Because they are principles of self-regulation, they are not always right and are commonly shared by the community. On the other hand, the law is coercive and regulates the behavior of the individual in society. It is applicable to all.

In this line, how to make societies fairer and safer for all? Aware that the world has become different from what it was three decades ago. In this respect, understanding the ethical and legal issues that are raised by these discoveries seems essential and they are equipped to face the challenges they pose. Obviously, there are many discriminations and other threats against people resulting from genetic research, with limited protection provided by the law (e.g. (Andrews et al., 2015; Furrow et al., 2013; Selita, 2019b). Because global legal systems, particularly those of countries with strong economies (USA, UK, Canada), are outdated as they are today, compared to current realities. This paradigm shift demonstrates the limitations of current laws that are unable to guarantee justice fairly. The law must evolve to ensure the protection of human beings. Because seeking to resolve issues using methods that impose or attack the integrity and very existence of man in his humanity is unethical and destructive to research.

Faced with this fact, strict respect for ethics in research is necessary to reduce and prevent abuses and discriminations linked to genetics in order to create a more equitable and safer world for all. It is time to adopt new provisions, new laws more adapted to these realities, to this new environment in order to render more equitable verdicts aiming at the protection of the human being. This will allow all humanity to obtain justice without barriers and to enjoy its benefits while mitigating the risks, strictly respecting the ethical codes of research because our actions today must not negatively impact the future of the next generation.

Reference

Andrews, L. B., Mehlman, M. J., & Rothstein, M. A., Eds. (2015). Genetics: Ethics, Law, and Policy (4th Edition). West Academy- ichttps://faculty.westacademic.com/Book/Detail?id=31475

Colleen M. Berryessa and Mildred K. Cho.2013. Ethical, Legal, Social, and Policy Implications of Behavioral Genetics. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4371728/

Fatos Selita, Marc Willers, Yulia Kovas.2020. ‘Race’ and other group discrimination in the genomic era. Legal Issues Journal.

Nuffield Counc. Bioeth Genetics and human behaviour: the ethical context. Rep., Nuffield Counc. Bioeth., London. 2002 http://www.nuffieldbioethics.org/genetics-and-behaviour.

Parens E, Chapman A, Press N. Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation. Johns Hopkins Univ. Press; Baltimore: 2005.

Fatos Selita. 2019.Improving Access to Justice: Community-based Solutions. https://doi.org/10.1177/2322005819855863

[1]Nuffield Counc. Bioeth Genetics and human behaviour: the ethical context. Rep., Nuffield Counc. Bioeth., London. 2002 http://www.nuffieldbioethics.org/genetics-and-behaviour.

[2] Parens E, Chapman A, Press N. Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation. Johns Hopkins Univ. Press; Baltimore: 2005.

[3] Fatos Selita, Marc Willers, Yulia Kovas.2020. ‘Race’ and other group discrimination in the genomic era. Legal Issues Journal.