issue today, especially with the advent
of new technology and companies like
AncestryDNA and 23andMe. While these
companies advertise themselves as a fun
way to learn about your family history or to
learn more about your health, the voluntary
(and potential involuntary) distribution
of this information can affect the privacy
of not only the individual, but of the
individual's close family members and
future generations. Genetic information,
if misused, can potentially be stored and
utilized without consent by law enforcement;
by employers with the potential to
discriminate against employees or potential
develop or advertise products; or even
worse, by private individuals with bad
intent who seek to "surreptitiously" obtain
personal information for the purpose of
discovering sensitive or embarrassing
personal information about others.
National Human Genome Research
Institute has long recognized the
importance of genetic privacy where
genetic information is being used for
research, clinical or other purposes.
for research purposes has been stored
anonymously to protect privacy. However,
genetic information by definition is
unique to each individual, which makes it
challenging to truly anonymize.
genetic information stored in databases for
research and clinical purposes, without
personal information like names or other
obvious identifiers, are subject to risk.
In 2013, a researcher affiliated with
the Massachusetts Institute of Technology
was able to identify five individuals from
a DNA database using only their DNA
information, age and the states that they
lived in in a matter of hours.
individuals, he was also able to find the
individuals' close relatives.
was proposed by geneticist, David W.
Craig, whereby DNA would be collected
from discarded needles of intravenous
drug users to establish a database to look
for viruses or DNA information and to
determine a particular individual's DNA
from the database of genes. The result
was shocking Dr. Craig was able to
develop a method to identify an individual
percent present. Moreover, DNA is not
the only type of genetic material from
which individuals can be identified. It
was discovered at Mount Sinai School
of Medicine that RNA data could not
only be used to identify individuals, but
could also be used to develop a "profile"
of an individual, including age, weight
and certain medical conditions, such as
diabetes or viral infections like HPV or
HIV.
the ways that new genetic privacy concerns
are being raised.
4
information is subject to the 4
and seizure. The federal government's
collection of genetic information expanded
rapidly more than a decade ago. In 2000,
Congress passed the DNA Analysis Backlog
Elimination Act of 2000, which required
certain felons primarily violent felons
who were convicted of murder, voluntary
manslaughter or sexual abuse to provide
DNA samples for inclusion in a national
database.
in judicial proceedings if otherwise
admissible; for criminal-defense purposes;
and for a population-statistic database
for identification research, or for quality-
control purposes, if personally-identifiable
information is removed.
Just four years later, Congress passed
the Justice For All Act, which expanded
the class of felons to all felons of federal
crimes.
practice focuses on insurance defense, intellectual
property and commercial litigation.
Jason Newman concentrates his practice in
the areas of civil defense, intellectual property
and environmental law. He is a registered patent
attorney with experience in patent, trademark and
copyright litigation.
322 West Lincoln
Royal Oak, Michigan 48067
jnewman@cardellilaw.com
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