Security of our Personal Genome

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Date
2003-08
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American English
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M.S.
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School of Informatics
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Abstract

Our personal genome, which is the map of our DNA, is our ultimate source of identity, which should be given our highest concern for security. The primary approach used for securing any highly sensitive health care data such as our genome would be to guard against any personal identity information being associated with the data. The belief that nameless data records eliminates risk and would be a benefit to research is the common pretense for how we manage our health data systems. However, the incredible advances that we are seeing with computational power and more affordable and sophisticated DNA sequencing software may be creating a problem greater then the benefit that it is providing. Now we must be concerned about all data in the health care systems that could provide a link to accessible identity free data. Old data records or samples that provide possibilities of DNA sequence matching to existing identity free genomic data presents a whole new problem. How might this change the face of health care? Will further advances in technology make it impossible for us to secure our personal health information? Solutions could lead to restricting our ability to improve health care or it could force us to rely more heavily on ethical judgment to protect the rights of patients. The unprecedented rate of recent advances in information technologies along with improved speed, economy and accuracy of mapping the human genome has created serious concerns about the usage and security of this new highly sensitive genetic data. Our knowledge of DNA has come along way in the 50 years since James Watson and Francis Crick first presented their discovery of the double helix. The discovery timeline has been crowded in recent years starting with the U.S, Department of Energy’s Human Genome Initiative in 1986 and culminating in completion of the Human Genome Project in 2003. The exponential growth of genomic scientific accomplishment now forces us to assume new milestones will arrive sooner then later.

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Submitted to the faculty of the University Graduate School in partial fulfillment of the requirements for the degree Master of Science in the Department Informatics of, Indiana University, August 2003
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