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The highly personal
nature of the information contained in DNA can be illustrated
by thinking of DNA as containing an individual's "future diary."
A diary is
perhaps the most personal and private document a person can create.
It contains a person's innermost thoughts and perceptions, and
is usually hidden and locked to assure its secrecy. Diaries describe
the past. The information in one's genetic code can be thought
of as a coded probabilistic future diary because it describes
an important part of a unique and personal future.
First, genetic
information is powerful and personal. As the genetic code is deciphered,
genetic analysis of DNA will tell us more and more about a person's
likely future, particularly in terms of physical and mental well-being.
The search for genetic information often involves locating predictors
of undesirable and stigmatizing conditions - such as cancers,
and conditions that lead to mental illness and dementia.
This information
is uniquely sensitive for a number of reasons. First, unlike ordinary
diaries that are created by the writer, the information contained
in the genetic code is largely unknown to the person in whose
genetic material it is found. Therefore, if this information is
obtained by someone else without the individual's permission,
another person would learn intimate details of the individual's
likely future life. A stranger could, in effect, read the future
diary of an individual without the individual even knowing that
the diary exists. There are many people, including insurers and
employers, to whom information about an individual's likely health
future would be useful.
Second, deciphering
an individual's genetic code also provides the reader of that
code with probabilistic health information about that individual's
family, especially parents, siblings and children. Third, since
the DNA molecule is stable, once removed from a person's body
and stored, it can become the source of an increasing amount of
information as more is learned about how to read the genetic code.
Finally, genetic information (and misinformation) has been used
by governments to viciously discriminate against those perceived
as genetically unfit.
Lee
M. Silver
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