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Running head: ETHICAL ISSUES INVOLVED IN THE HUMAN GENOME PROJECT 1

ETHICAL ISSUES INVOLVED IN THE HUMAN GENOME PROJECT 8

TEXAS A&M UNIVERSITY COMMERCE

RAJU MAJHI

ETHICAL ISSUES INVOLVED IN THE HUMAN GENOME PROJECT

CSCI 415 GLB/ETHICS, LAW AND CYBERSECURITY

MEIKANG QIU

12/02/2020

Ethical Issues Involved in the Human Genome Project

Background and Historical Perspective

A collective effort between the United States National Institutes of Health (NIH) and the Department of Energy (DOE) established the human genome project (HGP) to categorize the whole human genome. The project started in 1990 which was initially intended to take a duration of fifteen years with a budget estimation of three billion dollars. The human genome project had five key objectives; the first objective was to categorize all of the genes contained in human deoxyribonucleic acid (DNA). The objective is exception since there is a reflection that the human genome is comprised of an estimation of 80,000 to 100,000 genes. The second objective of the program was to acquire the structures of the three billion DNA base pairs that forms the human DNA. The next two goals of the program are the storage and safety of all gathered data in an electronic system and build tool for analyzing this information. The final objective of the project is the way to address the ethical, legal and social concerns that may come up during the period of completing the projecting.

The developments in technology enhanced the completion of the program earlier than anticipated. By the year 2003, the project was completed and executed as earlier planned and all the five objectives of the HGP were achieved. The project had new objectives to work 90% draft classification by 2000 summer period and complete the project in the year 2003. The outcome of the 2003 completed project would be 100% high quality classification of the entire human genome’s base pair structures. The United States National Institutes of Health and the Department of Energy have also indicated that it is a top priority for the HGP to not only finish the program but to avail to the public all the information generated (National Human Genome Research Institute, (2020). The timely completion of the human genome project did not happen at a cheap price. The budgets estimation for the DOE for the year 1999 only was over 80 million dollars and over 200 million dollars for the NIH, which brought a grand total of over 300 million dollars for only one year.

The United States National Institutes of Health and the Department of Energy were involved in the human genome project with the preparation and controlling of all the undertakings of the HGP and also started to fund it in 1998. There were also many institutions of higher learning and test centers across the United States that supported and also contributed funds for the operations of the project. According to Gibbs (2020), several international partners also supported the human genome project, such as China, France, Japan, Germany, and the United Kingdom.

One of the most determined and challenging pursuits to ever be undertaken by science is the human genome project. The project was driven by two clear purposes; one was to identify the location of the entire genes in the human genome. Secondly, it was aiming at acquiring the structure of nucleotides that is the base pairs that created the DNA of the human genome. The specific arrangement of the paired bases is very important since it plays a key role in determination of whether an organism is human, animal, fungi, bacteria, or another species of plant among others. The human genome project is crucial because it generates significant information related to numerous things such as establishing human evolutionary background and making a comparison with other organisms. Besides, the project is vital since it helps scientists to mine information from the DNA, which supports the development of new treatment methods, curing and prevent measures of numerous diseases that affect human life.

Current Issues

Despite the fact that the HGP was initiated towards the end of the 20th century, it led to exceptional developments in the field of science that resulted to the understanding of the double helix of the deoxyribonucleic acid, which contains all human genes. Nucleobases are the four bases that are normally comprised in the DNA. The four bases create pair making the DNA double helix arrangement. Genes originate from the DNA with the bases structured in different ways in various forms of genes. According to Fine (2019), the human genome project was involved in the discovery of all genes that are generated from various base pair combinations. Nearly three billion base pairs were identified through the help of the project. The base pairs created nearly twenty thousand five hundred genes. According to Fine (2019), allowing public access to this type of information through publications and other avenues, the human genome foundation shaped a base of unlimited scopes in the use of the information for comprehensive analysis of the human genes to add value in the life of all human being.

From the time when the human genome project was initiated thirty years ago, genomics has highly been utilized in medicine, research and, progressively, daily human life. Medical developments and innovations have taken place since the amazing invention of the human genome project (Green, (2020). For instance, cancer is recognize as a genomic disease and medical professionals are presently in a position to study a single tumor in the collection of genomic alterations and improve the classification of the tumor to provide effective treatment methods. Other medical innovations that are presently being conducted but are yet to be concluded and will bring numerous benefits in the medicine field through the human genome project is the capability to enter genomic information into electronic records (Kulynych & Greely, 2017). Although, this appears to be of great help and importance it is raising ethical concerns.

Ethical, Legal and Social Issues

The ethical, legal and social issues program was initiated in 1990 and integrated with the National Institutes of Health and the Department of Energy alongside the human genome project. The program was designed to make sure the possible ethical challenges of the HGP could be addressed in a timely manner before the information was utilized in medical applications (Sándor, 2018). Besides the projected developments in biomedical sciences field the improved accessibility of genetic information will have numerous ethical, legal, economic, social effects which will greatly affect human lives. Some of the ethical concerns brought about by increased genetic information are associated with the appropriate and rational utilization of genetic knowledge by law enforcement agencies, insurers, employers and adoption bodies. The greatest concern is about the privacy and confidentiality of genetic information. An entity accessing, owning and using individual genetic information should be clearly defined. Genetic information can have vital consequences for person identity as well as the way a society views the person. Also, it creates ethical and moral concerns in the clinical aspects of genetic therapy, reproductive behavior and genetic development (WHO, 2020). The economic effects are linked to the issues of commercialization genetic information and resulting products. All of these concerns will have legal implications.

A few concerns taking part in the human genome project are bringing out issues ethically, legally, economically, and socially. According to Fine (2019), genome editing is one of the ethical issues that is of concern. The safety and effectiveness of genome editing has been verified, even though the issues of editing for improvement might occur rather than to treat an illness. Handling and reimbursements of genetic tests in another issue of ethical concern. According to the National Human Genome Research Institute (2020), there should be systematic methods of examining reimbursement for genetic tests created by payers like Medicare and insurers. This will assist patients to fully access the benefits of genetic testing. Presently, various barriers exist which make it hard for payers to undertake this responsibility. Lack of this information, insurers cannot appropriately evaluate how to compensate for genetic tests. Additionally, Ethical issues on the human genome project arise particularly with the opinion that by having knowledge about human genetic structure, scientists manipulate the human genes to make “super humans” which is changing nature’s process. Further, religious groups observe this as compromising the works of God and as such are wicked.

Other potential ethical issues include: privacy of genetic information; It is unethical for medical professionals to disclose private genetic information to anyone other than the person themselves (Sándor, 2018). However, some insurers demand genetic information to establish their rates and policies. The Genetic Information Nondiscrimination Act of 2008 is a federal legislation that concerned with genetic information. It is basically an antidiscrimination law that does not deal with privacy. Another ethical issue is fairness in its use by the public; Employers, learning institutions and insurers all possess genetic information for individuals and must avoid unfairly judging an individual based on their genetic condition. The most crucial Federal law that implicitly prohibits any kind of genetic discernment is the Americans with Disability Act of 1990. It provides employment protections for disabled people. The E.L.S.I programs is focusing on ending genetic discrimination.

Additionally, gene patenting: It is the legal process of demanding ownership of a certain gene of or part of DNA. It is not clear since it is not possible to own genes which are present in all humans. The main aspects of the Bayh-Dole Act of 1980 and responses to this law relates to gene patenting and commercialization. Besides, genetic testing of fetuses, children and adults: there are various techniques of genetic testing for each type of person that have different concerns (WHO, 2020). For example, can parents have authority to screen a child for an illness since it can cause mental problems to the child? Can a child also have the authority to reject parent’s endeavors to carry out screening? Another ethical issue in HGP is psychological issues: Individuals who undergo genetic testing may discover they have a certain condition which can cause psychological response like depression. The outcome can be worsening of their medical condition.

Summary

Lastly, the human genome project is major venture that is providing a pool of scientifically valuable genetic information. The information is the path to developments in diagnosis, in therapy, and also in prevention. At the same time, the human genome project brings new knowledge to address current heath care challenges while bring up perplexing ethical, legal and social issues. It has been noted that genetic information can be unfairly utilized.

References

Fine, R. (2019). Lessons from the Human Genome Project - Science in the News. Science in the News. Retrieved 2 December 2020, from http://sitn.hms.harvard.edu/flash/2019/lessons-from-the-human-genome-project/.

Gibbs, R. (2020). The Human Genome Project changed everything. Nature Reviews Genetics, 21(10), 575-576. https://doi.org/10.1038/s41576-020-0275-3

Green, E. (2020). A Vision for the Next Decade of Human Genomics Research. Scientific American. Retrieved 2 December 2020, from https://www.scientificamerican.com/article/a-vision-for-the-next-decade-of-human-genomics-research/.

Kulynych, J., & Greely, H. (2017). Clinical genomics, big data, and electronic medical records: reconciling patient rights with research when privacy and science collide. Journal of Law and the Biosciences, lsw061. https://doi.org/10.1093/jlb/lsw061

National Human Genome Research Institute. (2020). The Human Genome Project. Genome.gov. Retrieved 1 December 2020, from https://www.genome.gov/human-genome-project.

Sándor, J. (2018). Genetic Testing between Private and Public Interests: Some Legal and Ethical Reflections. Frontiers In Public Health, 6. https://doi.org/10.3389/fpubh.2018.00008

WHO. (2020). Genetic testing. World Health Organization. Retrieved 2 December 2020, from https://www.who.int/genomics/elsi/gentesting/en/.