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What is human privacy?

While mankind debates the future of digital content ownership, we find that the ownership of our very living tissue is at stake and the genetics from the essence of our cells are initiating arguments over the future of human privacy.   Biomedical research appears to be changing what others may be allowed to know about us as well as what we may be allowed to know about ourselves.

 

PRIVACY OF THE HEREDITARY GENOME

Researchers with Genaissance Pharmaceuticals Inc. of New Haven, Connecticut, have been discovering new things about the general nature of human beings lately that may be unsettling to some.  Using genome material from 82 unrelated people primarily from four backgrounds -- white, black, Asian and Hispanic, they found what has been described as "an astonishing variance."

"We've looked at the largest number of individuals and diverse populations that's ever been done," said Gerald Vovis, Genaissance chief technology officer and senior vice president and an author of the study appearing in the journal Science.

Dr. Francis Collins is the director of the National Human Genome Research Institute, part of the U.S. government's National Institutes of Health.  Dr. Collins said that the study presents "considerable optimism" for using gene-variation strategy to find hereditary contributions to diseases.

While this research has powerful implications for the treatment of human diseases, in practice the application of this knowledge however is particularly difficult because it crosses racial and cultural boundaries. Vovis said he foresaw a day when patients would provide a blood sample to their doctor to allow for a genetic examination that could guide treatment decisions. However Vovis is particularly concerned that some patients might fear this private genetic information could be misused or exploited.

"We have concerns about it," Vovis said. "We are very well aware of the fact that in order for people to take benefit from this, they are going to have to feel that their genetic information is being treated in a confidential manner."

Racial and individual genetic differences has long been used as a formal basis for discrimination of the basic human rights of individuals and populations. Without strong and flexible distributed content control, the ability of Medical Science to analyze and treat patients with hereditary genetic knowledge remains in jeopardy.  This is a highly sensitive issue for researchers.  The fear is that the unbridled distribution of genetic knowledge about individuals, races, cultures, and families would be seen as an unacceptable risk to a large numbers of people. If this were to occur then the powerful solutions to be provided by genetic medicine might be given over to superstition and politics.  

 

 

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