The Brave New World Is Here: Privacy Issues and the Human Genome Project: Governments and Courts Must Step in to Provide Protections and Regulations for the Use of Individuals' Genetic Testing Results

By Curley, Robert A., Jr.; Caperna, Lisa M. | Defense Counsel Journal, January 2003 | Go to article overview

The Brave New World Is Here: Privacy Issues and the Human Genome Project: Governments and Courts Must Step in to Provide Protections and Regulations for the Use of Individuals' Genetic Testing Results


Curley, Robert A., Jr., Caperna, Lisa M., Defense Counsel Journal


SCIENTIFIC discoveries and advances in biological understanding during the 20th century paved the path for the Human Genome Project.

"We used to think our fate was in our stars. Now we know, in large measure, our fate is in our genes," said James Watson, who co-discovered the double-helix structure of DNA with Francis Crick in 1953. (1) As for Crick's thoughts, he stated, "You, your joys and your sorrows, your memories and your ambitions, your sense of personal identity and free will, are in fact no more than the genetically determined behavior of a vast assembly of nerve cells and their associated molecules." (2)

DNA was discovered in the mid 1800s. In 1868, a Swiss biologist, Friedrich Miescher, identified DNA in the nuclei of pus cells obtained from discarded surgical bandages. But it was during the 20th century that there were great advances in biological understanding of DNA.

In 1943, American Oswald Avery proved that DNA carries genetic information. He even suggested that DNA might actually be the gene. Most people at that time thought the gene would be protein, not nuclei acid, but by the late 1940s, DNA generally was accepted as the genetic molecule. In 1952, Alfred Hershey and Martha Chase performed the definitive experiment that showed that DNA was, in fact, the genetic material.

Once more was known about DNA, the next step was to figure out the molecule's structure. The race was on. At Cambridge University, there were Watson and Crick. At the same time, at King's College in London, Maurice Wilkins and Rosalind Franklin also were studying DNA. In 1953, building from the King's team's research, Watson and Crick presented a model of the structure of DNA. In 1962, Watson, Crick and Wilkins shared the Noble Prize for physiology and medicine. Franklin had died by 1962, and the Nobel Prize rules do not allow an award to be made posthumously, and interestingly nor do they allow more than three scientists to share the award.

Franklin actually was the one who discovered and first stated that the sugar-phosphate backbone of DNA lies on the outside of the molecule. She arrived at this discovery after examining the DNA molecule under an x-ray beam, a technique called x-r. ay crystallography. It would be interesting to know which three of the four scientists would have received the Nobel Prize had Franklin not died before the award was given.

Although genetics dates back to the mid 1800s, the last decade has proved to offer the milestones in genetic history, what with technology advances and revolutionary scientific endeavors like the Human Genome Project. DNA's discovery has been called the most important biological work of the last hundred years, and the research that it has sparked will lead to monumental developments in the next hundred.

HUMAN GENOME PROJECT

A. What Is It?

The Human Genome Project (HGP) is an international research effort to determine the sequence of the three billion chemical base pairs that make up the human DNA and to identify the approximately 35,000 genes in human DNA. While the HGP was conceived as early as the mid 1980s by scientists in the U.S. Department of Energy, the initial planning process culminated in 1990. Since then, researchers from the United States, the United Kingdom, Germany, Japan, China and France have been reconstructing DNA sequences to produce detailed physical maps of the human genome.

The international consortium is supported mostly by the U.S. National Institutes of Health and the Wellcome Trust, a philanthropic organization based in London and directed by Dr. Michael Dexter. Other governmental agencies and charitable institutions in the various countries also fund the project. The driving force behind the project is the identification and eradication of all genetically based diseases.

The U.S. Human Genome Project is a 13-year effort coordinated by the Department of Energy and the National Institutes of Health. …

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