The Human Genome Project, Part 3

The Ethics Behind the Human Genome Project 

What are the implications of the Human Genome Project?

The HGP has differing levels of importance to different people. Many scientists feel it is a huge and necessary endeavor that will change the face of science. Some believe it is an act of wasteful spending on another useless government project. But no matter how one feels about the HGP, it will impact the world. If successful, the HGP will have produced a high quality reference for all the genes in the human body by 2003. All the genetic material that determines what diseases we are susceptible to, what physical and mental traits we have inherited and what behaviors we are genetically determined to express will be mapped and quantified. This will conceivably allow a new explosion of medical research and treatment options, but will also raise important ethical concerns.

There are many socio-ethical implications of the HGP. 
Three of the most important ones
1. Behavioral Genetics
2. Gene Testing/Therapy
3. Privacy Issues


What are some ethical issues involved with the Human Genome Project? 

As more genes are identified, the field of behavioral genetics becomes more complicated. If genes that indicate susceptibility for criminality, intelligence, or homosexuality are discovered, how should our society respond? 

Should our court system take a genetic disposition for crime into account during trial or sentencing? Instead of jail time, should doctors attempt to use gene therapy to remove the disposition towards violence? What should be done if the crime is non-violent? Should doctors attempt to alter a bank robber's or drug user's genome? 

Should or could employers know their employees' genetic potential for intelligence or criminality? Could hiring practices be based on such knowledge? Would people be punished for acts they never committed, simply because they have a genetic predisposition to commit them? Should laws be written banning such practices and ensuring privacy?

Should the government prevent insurance companies from demanding this genetic information from their customers? If the government does not intervene, would the insurance companies simply deny coverage to healthy people that may simply have the genetic potential for developing a particular disease? 

What is this debate based on? Where is it going?

The various specific socio-ethical decisions that our society must make are based on a few fundamental points:

Ethical, Legal, and Social Implications (ELSI) Research Program

The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have devoted 3% to 5% of their annual Human Genome Program budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. This represents the world's largest bioethics program and has become a model for ELSI programs around the world. The pyramid below depicts the Ethical, Legal, and Social Implications (ELSI) Research Program goals for 1998-2003. 



The first goal, at the top of the pyramid, deals with the issues around the completion of the first human DNA sequence and the study of human genetic variation, making concrete the vision that the advances in genome science will be an important factor contributing to the ELSI research agenda. The second and third goals focus on the integration of the information generated by these new discoveries into clinical, non clinical, and research settings. The fourth goal examines the interaction of this information with philosophical, theological, and ethical perspectives. Finally, providing the foundation for all of these explorations is the fifth goal, examining how the understanding and use of genetic information are affected by socioeconomic factors and concepts of race and ethnicity. 

Links for more information

"A public dialogue is needed," said Craig Venter, one of the nation's top genome scientists. Just as this country has resolved many other socio-ethical dilemmas in the past through debate, legislation, activism, and the courts, it must also settle this one. 

Ethical, Legal, and Social Issues (ELSI), from the US National Institutes of Health

Ethical, Legal, and Social Issues (ELSI), from the US Department of Energy

The Institute for Behavioral Genetics

Article-Is our fate in our genes?

Council for responsible genetics

Biotechnology patents and new technologies

The National Human Genome Research Institute privacy legislation initiatives

The United Nations Educational, Scientific, and Cultural Organization (UNESCO): declaration on the human genome and human rights

Sources: The Human Genome project information pages funded by the DOE (www.ornl.gov/hgmis)

Genome Project, Part 1 | Genome Project, Part 2 | Genome Project, Part 3 | Genome Project, Part 4 | Genome Project, Part 6