The Case Against Perfection: Ethics in the Age of Genetic Engineering

Nonfiction | Book | Adult | Published in 2007

A modern alternative to SparkNotes and CliffsNotes, SuperSummary offers high-quality Study Guides with detailed chapter summaries and analysis of major themes, characters, and more.

Download PDF

Summary

Background

Chapter Summaries & Analyses

Chapters 1-2

Chapter 3

Chapter 4

Chapter 5

Epilogue

Key Figures

Themes

Index of Terms

Important Quotes

Essay Topics

Tools

Beta

Discussion Questions

Background

Historical Context: Genetic Research and The Human Genome Project

The field of genetic research expanded significantly with the launch of the Human Genome Project in 1990. It was an international research effort in which scientists from the United States, the United Kingdom, France, Germany, Japan, and China worked together to map and sequence the human genome. The goal of the Human Genome Project was to enable scientists to gain a better understanding of how genes pass down heritable traits and health conditions. In addition to human DNA, the project also sequenced the genomes of other select organisms, including mice, fruit flies, and the bacterium E. coli.

The project was declared complete in 2003 when a successful draft of the human genome was sequenced. This draft accounted for 92% of the human genome and contained fewer than 400 gaps of unknown DNA. This was thought to be as accurate as scientists could possibly be at the time, given technological constraints. Years later, in 2022, the Telomere-to-Telomere consortium announced that they had successfully filled in the gaps and produced the first complete human genome sequence.

Philosophical Context: Biomedical Ethics

Although mapping the human genome gave scientists a better understanding of heredity, it also raised several new ethical questions. If genetic testing could determine who was at elevated risk for cancer, for example, it might also allow health insurance companies to charge such people higher rates or deny them coverage altogether. This was just one of the many forms that genetic discrimination might take. To respond to these concerns, the Human Genome Project founded the Ethical, Legal, and Social Implications (ELSI) program in 1990. The ELSI program is a policy-making body that gives grants to address ethical concerns within genetic research. They are not a regulatory agency and do not have the power to make legislative decisions about the ethics of genetic research. More speculative ethical concerns surrounding biomedical research have developed as genetic research has advanced. As Sandel addresses in this book, many people worry about the ethics of DNA and genetic research with regard to future possibilities of human bioengineering. Some have concerns about the possibility of a future where human genetic modification results in the creation of a stratified society, with those who have received genetic modifications at the top. Others worry about the ethical implications of cloning.

Human cloning has been banned in many countries, and cloning still remains a controversial subject. More recently, the advent of genetic testing has raised questions about the ownership of DNA. Companies that provide genetic testing often share the genetic material that they collect from clients with third parties, including law enforcement. Some politicians in the US have even called for the development of a genetic database of all citizens, regardless of criminal history. Many fear that the sharing of genetic material with government and law enforcement would represent a gross violation of medical privacy laws and civil liberties. The ethical questions that spring up around biomedical research and information are complex and nuanced and do not have easily identifiable answers. It is the role of biomedical ethicists to respond to these concerns and to influence the development of policies and laws concerning biomedical research.