The discovery of DNA and its structure have opened many doors, both good and bad. Despite several obstacles and constantly evolving legal and ethical issues, unlimited possibilities are being proposed. Everything from cloning organs for medical procedures to gene therapy to genetically altering crops to cloning actual, full human beings are now real possibilities. The development of DNA knowledge has come a long way in a very short period of time, and the future is expected to bring much more. Already, the entire human genome has been sequenced, and others are in the process of completion. But, is it ethical to sequence human genomes? How can we benefit from this knowledge, while keeping it safely under control? Many people are excited by the possibilities that this knowledge provides because there is great potential to help a lot of people. However, there also exists a fear of this knowledge and of how it can be used.
In April of 1953, James Watson and Francis Crick discovered the double helical structure of DNA. From this point forward, research and knowledge of human DNA rapidly increased and the possibility of sequencing the entire human genome became a reality. The Human Genome Project consortium was formed and includes institutes all over the world. Over the years, several private and public organizations worked to make sequencing the human genome a possibility. Then, in 1998 Craig Venter announced that his company, Celera would use "shotgun" methods to sequence the human genome. This sparked much controversy and created a rivalry between this private company and the government-sponsored project. Then early in February 2001, both Celera and the government sponsored project, headed by Francis Collins, announced and published there completed human genome sequences simultaneously. Celera published their draft in Science Magazine, while the government organization, HGP published their draft in Nature. (1) However, along with the research and the discoveries came new ethical dilemmas and legal questions. To deal with these new issues, the Ethical, Legal and Social Implications (ELSI) program was created in 1990 as a part of the Human Genome Project. This organization was created "to anticipate and address the ethical, legal and social issues that arise as the result of human genetic research." (2) The legal issues surrounding genetic testing and its role in insurance are causing new ethical concerns so several laws have been and are being created to prevent discrimination and regulate the use and access of genetic information. Many states have already passed laws preventing discrimination based on results from genetic tests (3). However, these laws do not prevent discrimination based on genetic information obtained from phenotypes, family history, or medical records. Private sector employer-sponsored health plans are also exempt from state insurance laws. Almost half of the population who has insurance has this type of insurance. (4) Because these state laws really do not prevent insurance companies from discriminating, several bills have been brought to Congress in hopes of regulating the use and accessibility of this information. While issues arising from human genome sequencing have begun to be addressed, there is much more to deal with including the question of weather or not it is even ethical to sequence human genomes.
1. "A History of the Human Genome Project." Science:
9 February, 2001: http://www.sciencemag.org/cgi/content/full/291/5507/1195.
2. "ELSI." National Human Genome Research Institute.
October, 2000: http://www.nhgri.nih.gov/ELSI/.
3. "Genetic Testing Reviewed by Congress." Science and
Technology In Congress. 26 July, 1999: http://www.aaas.org/spp/dspp/cstc/bulletin/articles15-19/gentest.html.
4. Department of Health and Humans, "Health Insurance in
the age of Genetics." The National Human Genome Research
Institute. July, 1997: http://www.nhgri.gov/NEWS/insurance/.