The Human Genome Project (HGP), founded in 1990, was a multinational project with the aim to sequence the entire human genome. Besides, its objectives included the generation of high resolution linkage and physical maps of the human chromosomes as well as the identification of disease causing genes. In addition, the HGP’s key goals also included addressing the ethical, legal, and social issues (ELSI) that may arise from the increasing the availability of genetic information, thereby representing the world’s largest bioethical program. This work adresses the most challenging ELSI concerns in detail and gives an overview about the state of research on the human genome.
Table of Contents
1. Introduction
2. Development and Goals of the Human Genome Project
3. Ethical, Legal, and Social Issues
3.1 Genetic Discrimination and Testing
3.2 Prenatal Diagnosis and Eugenics
3.3 Patenting and Ownership of Genetic Information
3.4 Free Will versus Genetic Determinism
4. Post-HGP Developments and Future Perspectives
Objectives and Topics
This essay explores the ethical, legal, and social implications arising from the Human Genome Project (HGP). It examines how the mapping of the human genetic code challenges traditional concepts of privacy, individuality, and societal fairness while discussing the potential for genetic discrimination and the philosophical debate surrounding genetic determinism.
- The history and technological evolution of the Human Genome Project.
- Ethical dilemmas in genetic testing, insurance, and employment.
- The societal risks of prenatal diagnosis and the concept of "designer babies."
- Legal and moral controversies regarding the patenting of human gene sequences.
- Philosophical reflections on free will versus biological predestination.
Excerpt from the Book
3. Ethical, Legal, and Social Issues
In Gattaca, a genetic read-out after birth determines the destiny of the main character Vincent: with predispositions for mental disorders and heart failure as well as a reduced life expectancy, he is a victim of genetic discrimination right from the start [2]. Although "it's illegal to discriminate on the basis of genetics -genoism it's called- [...]" [1]. Vincent seizes the only chance to avoid genetic discrimination by "borrowing" the genetic profile of an injured star athlete [2]. This is just a movie, but how real is such a genetic discrimination nowadays?
Basis of this concern is always a genetic test, by which a person's DNA - taken from cells in a sample of blood or, occasionally, from other body fluids or tissues - is examined for some anomaly that represents a disease or disorder. This anomaly may be large, like a missing or additional peace of a chromosome, or small like a missing, additional or alternated nucleotide base. For instance, genetic testing is used to confirm suspected DNA mutations responsible for a certain phenotype or to look for a possible predisposition for a disease. Today, around 1,000 genetic tests are available [12].
I think many people are still believing that genetic discrimination is more science-fiction than reality, but in the United States, cases have already been reported where employers used findings from genetic tests to avoid recruiting candidates that were shown to possess genes associated with susceptibilities for diseases that are expensive, interminable or incurable [13]. Besides employers, people are afraid that also insurance companies might take use of genetic information to calculate the risk of developing certain diseases for their candidates. As result, individuals with high risk status might be totally excluded, have reduced coverage or pay astronomically high contributions for a health or life insurance.
Summary of Chapters
1. Introduction: This chapter introduces the societal concerns regarding genetic technology, using the movie Gattaca as a frame of reference to discuss genetic determinism and the risks of a gene-centered society.
2. Development and Goals of the Human Genome Project: This section details the history of the HGP, its scientific objectives like linkage mapping and sequencing model organisms, and the initial criticisms from the scientific community regarding resource allocation.
3. Ethical, Legal, and Social Issues: This chapter analyzes the core ELSI topics, specifically focusing on discrimination in insurance/employment, the implications of prenatal testing, the patenting of genes, and the philosophical debate on human free will.
4. Post-HGP Developments and Future Perspectives: This final chapter discusses the legacy of the HGP, the rise of modern sequencing technologies like whole-exome sequencing, and the future of personalized medicine.
Keywords
Human Genome Project, HGP, Genetic Determinism, ELSI, Genetic Discrimination, Genetic Testing, Prenatal Diagnosis, Bioethics, Patenting, DNA Sequencing, Personalized Medicine, Gattaca, Free Will, Sociobiology, Genome.
Frequently Asked Questions
What is the central focus of this work?
The essay addresses the ethical, legal, and social implications arising from the Human Genome Project and the subsequent widespread availability of genetic information.
What are the primary themes discussed in the paper?
The main themes include genetic discrimination, the morality of patenting genetic sequences, the challenges of prenatal diagnosis, and the philosophical implications of believing in genetic determinism.
What is the main research question of this study?
The work investigates the ethical feasibility of utilizing personal genetic information in society and evaluates how this knowledge impacts human identity, privacy, and equality.
Which scientific methods are analyzed?
The paper examines methodologies such as linkage analysis, physical mapping of cDNA fragments, and the technical evolution of whole-genome and whole-exome sequencing.
What topics are covered in the main section?
The main section details the history of the HGP, the rise of genetic testing, the legal protections like GINA, and philosophical debates regarding behavior and genetics.
Which keywords characterize this publication?
Key terms include Human Genome Project, genetic discrimination, bioethics, patenting, and personalized medicine.
How does the author view the patenting of genes?
The author argues that genes should be viewed as the "common heritage of mankind" rather than private property, suggesting that patenting hinders accessibility for medical development.
What does the author suggest about the future of genetic medicine?
The author highlights that while sequencing is becoming routine and cheaper, there is an urgent need for education and regulation to prevent misuse and ensure equitable access.
- Arbeit zitieren
- B.Sc. Simon Schwörer (Autor:in), 2012, The Human Genome Project, München, GRIN Verlag, https://www.hausarbeiten.de/document/204136
