DNA is so tiny, only a few microns across,
that we often donít spend much time thinking about how much of our most
personal and private information it contains. Yet each individualís DNA also
offers an intimate look
into family history, risk for illness, behavior, internal clock, propensity for thrill
seeking, and countless other aspects of a personís life, personality, behavior,
and place in the world. Accessing this treasure trove of genetic information
has some amazing benefits, but it also comes with some serious concerns.
While DNA may be small, itís packed with
information that has the potential to cause some pretty big problems.
Uncontrolled access to this information, whether in a medical or law
enforcement setting, could set individuals up for violations of privacy and
discrimination, and as genetic testing becomes more common and inexpensive, the
issues surrounding the protection of genetic information will become ever more
pressing concerns in the larger public discourse.
Genetic privacy may not yet be a concern
for most Americans, but as technology develops and practices change, itís
critical to know what risks you face as well as your rights, the laws that
protect you, and how you can ensure your DNA isnít be accessed and analyzed
without your knowledge and consent.
DNA Law and Policy
While the structure and makeup of DNA has
been known since the late 1950s, it was not until the 1970s that DNA
was sequenced. It would be
nearly two decades before an efficient method of sequencing DNA would be
developed, allowing it to be used outside of the scientific setting. Because
the use of DNA profiling has only recently became practical for use in medicine
and law enforcement, there arenít yet that many laws that address the privacy
and discrimination risks posed by genetic information. Here are just a few that
have passed or are on the docket for the coming year that play a major role, or
have the potential to, in the security of your DNA.
Genetic Information Nondiscrimination
in 2008, GINA prohibits the use of genetic information in health insurance
and employment. This means that health insurers and group health plans
cannot deny coverage or charge higher premiums to an individual based on a
genetic predisposition for developing a particular illness. It also ensure
that employers cannot make any decisions with regard to hiring, firing,
promotion, or job placement based on genetic data.In light of the recent
growth of genetic testing, however, many think GINA needs amending.
Provisions have been proposed that will help protect genetic information
from being used to discriminate in life or long-term care insurance
coverage and will ensure that data from genetic testing is not
disseminated in research studies or other ways without an individualís
consent.The state of California has already passed
of this nature that will ensure DNA canít be used to discriminate in the
areas of housing, education, public accommodations, life insurance,
mortgage lending, and elections, so it may only be a matter of time before
federal laws follow suit.
Act of 1994:
The DNA Identification Act was among
the first laws to address the establishment of federal databases of DNA
information, passed into law in 1994. The act authorized the creation of
CODIS, a national database of DNA identification records of persons
convicted of crimes, the analysis of DNA samples recovered from crime
scenes, and the analysis of DNA samples taken from identified human
remains. The act was modified in 2004 by the Justice for All Act, which
expanded the offenses for which DNA could be collected, created a new
system of indexing, and required national accreditation for forensic
Fingerprinting Act of 2005: The DNA Fingerprinting Act allowed
the national CODIS database to include samples from any individual from
whom collection was authorized under state law. It also made it
permissible for DNA to be collected from federal arrestees and from
non-U.S. detainees. As a result, criminal DNA databases have rapidly
expanded, with nearly all states and the federal government maintaining
their own systems today. It has not been legislation without criticism,
however. Some argue that it has unjustly allowed for the cataloging not
only of convicted individualís DNA but also that of those accused or
arrested for a crime.
Genetic Privacy Law: One state that is working hard
to protect the genetic privacy of its constituents is California. Authored
by state senator Alex Padilla, the law would help protect genetic
information from being used without consent, requiring research and health
organization to acquire consent to collect, share, and retain genetic material
and information. In 2006, Minnesota passed a similar law and over the past
year South Dakota, Alabama, Massachusetts, and Vermont have all proposed
related bills that would define genetic materials as personal property. As
of yet, none of those bills have become law.
Also important to note are state laws on
when and why DNA information can be forcibly collected. In all 50 states, those
who have been convicted of a felony of any kind must submit DNA to both the
national CODIS database and state databases. Yet policies differ from state
with regard to when DNA evidence can be collected from those who are accused or
arrested for a crime and have not yet been convicted. In 28 states, arrestees
can be subject to DNA collection. Thirteen of those states collect samples for
anyone arrested for a felony while the rest limit collection to violent crimes,
including sexual assaults. Seven states also collect DNA for certain
While this might help in solving crimes, it
also poses some privacy issues
. Probable cause is
only required in 11 states to obtain or analyze a sample from an individual who
has been arrested for a crime. More troubling, perhaps, is that even if an
individual is acquitted of the charges, DNA information remains in the system
unless the accused requests for it to be expunged; the state does not take
responsibility for removing DNA evidence from those who have been judged innocent.
Court Cases on DNA
Laws regarding DNA and the collection of
genetic materials have been hotly contested over the past decade. Many believe
that current state laws infringe on the Fourth Amendment and are tantamount to
unreasonable search and seizure. Others have argued that DNA laws violate the
Fifth Amendment, with the obligation to provide DNA evidence acting as witness
against the accused him or herself. To date, many major cases involving DNA are
still being addressed by the Supreme Court. Here are just a few that may shape
federal and state law over the coming years or that have already impacted DNA
privacy, criminal law, and genetic policy nationwide.
Maryland v. King:
This case is
by the Supreme Court after the justices agreed it to hear it late last
year. Previously, Marylandís top court ruled that taking DNA from
individuals arrested, but not convicted, for a serious crime was a breach
of the Fourth Amendment right against unreasonable search and seizure. If
this decision is upheld, laws in 21 states and federal law enforcement
practices could be impacted, and in the future, law enforcement officials
would be required to procure a warrant prior to obtaining DNA evidence
from suspects in a case.
State of Minnesota: The Minnesota Supreme Court
found the stateís own department of health in violation of the law for
failing to dispose of blood samples routinely used to screen newborns for
serious illnesses. In some cases, the samples were used to validate new
genetic tests, a clear violation of the stateís Genetic Privacy Act.
University School of Medicine v. Catalona:
In 2008, the
Supreme Court ruled that tissue and serum samples donated to the school
could continue to be used for cancer research and that donors could not
require that the samples be transferred elsewhere, as former
William Catalona had argued. This is significant for DNA privacy, as it
acknowledges that once samples are donated that they become the property
of the institution, not the donor.
Kohler v. Englade:
faced a major legal challenge with this Louisiana case. In 2003, Shannon
Kohler was asked to submit a DNA sample by Baton Rouge police. His refusal
led to him being named as the primary suspect in a serial rape and murder
case. Kohler eventually provided DNA and was cleared of the charges, but
alleged that the police didnít have probable cause to compel him to give
up his DNA. The Circuit Court of Appeals agreed, saying that the probable
cause provided by law enforcement was so broad that it would have
encompassed thousands in the Baton Rouge area. This decision helped to
toughen the circumstances under which a warrant for DNA evidence could be
granted, at least in the state of Louisiana.
Attorneyís Office v. Osborne:
while the courts have largely upheld the right of law enforcement to
compel those who have been arrested or convicted of a crime to give DNA,
once individuals are convicted of a crime, they do not have a
constitutional right to their own DNA evidence nor that collected from the
crime scene. In older cases, this means that DNA evidence cannot be
reanalyzed using better, more accurate methods; a practice that has
already exonerated many behind bars. According to the Supreme Court ruling
in 2009, individuals do not have the right to post-conviction access to
Stateís evidence for DNA testing, making it impossible to exonerate those
who may have been convicted falsely. Luckily, while the federal government
does not mandate this, many states do allow for post-conviction DNA
This is hardly a complete list of all the
major cases involving DNA testing and genetic privacy. For a great history on
the subject, read a breif summary of major cases from
Rhode Island College.
For more information about major court cases on DNA around the world as well as
some older cases here at home, check out the
Electronic Privacy Information Centerís
collection of important cases that have impacted genetic privacy all over the world.
When Your Genetic Privacy Is at Risk
While much of DNA law has to do with those
whoíve committed a crime or been accused of committing a crime, the reality is
that your genetic privacy can be at risk even if youíre a law abiding citizen.
There are a number of cases when your
DNA can be collected, analyzed, or retained without your consent.
You donít have
to be accused of a crime in some cases to have your DNA requested by law
enforcement. DNA dragnets occur when law enforcement officials as
hundreds, sometimes thousands, of (presumably) innocent people to give
samples of their blood or saliva in the hopes that one will be connected
to a crime. While individuals can refuse to give DNA, in some cases the
courts have forced compliance and most who refuse have faced increased
scrutiny as a suspect in a crime, despite the fact that many see the
request as an invasion of privacy.DNA dragnets arenít especially common in
the U.S., but in other places, like the
U.K. and Germany,
they have become common practice. In one case, DNA was collected from
16,000 individuals. While dragnets have been helpful in identifying the
perpetrators of several high profiles cases, some whoíve been forced to
partake say the dragnets have had
and have petitioned to have their DNA returned after being cleared.
Directly giving a sample isnít the only way for law enforcement officers to get a
sample of your DNA. If your saliva is transferred onto another object,
which you then discard, that object can be legally collected and used to
analyze your DNA. While this practice has been challenged, it has held up
in court because law enforcement officials state that there can be no reasonable
expectation of privacy with regard to items that have been discarded. Not
worried that the police will come after your DNA? Be aware that stray DNA
could also be accessed by others looking for genetic information, like
family members or those seeking to establish paternity.
Family member searches:
Another occasion when an innocent person may have their DNA requested by law
enforcement is when a member of your family is suspected to be guilty of a
crime, but no DNA can be gathered from that person because he or she canít
be found. In these cases, sometimes close family members are asked to
submit their DNA to look for matching elements. If you wish to aid law
enforcement, make sure that your DNA sample will be destroyed after it is
analyzed, not stored.
Participation in studies:
Currently, few states have laws that protect genetic data once it has been collected
and analyzed for research. This means that genetic material can be reused
in future studies, transferred between institutions, or disseminated
without the permission of the original donor. This doesnít mean that
individuals shouldnít participate in research, but they should find out in
writing before the study what will be done with their genetic information.
have shown that DNA data
alone can easily be used to figure out an individualís actual identity, a
fact that could influence insurance and employment opportunities.
Elective genetic testing:
about genetic condition opt to have their DNA sequenced by a private
company. This can be beneficial, but it
does come with
Not all DNA testing facilities have airtight
and some may do little to ensure your information stays confidential. If
you submit to testing from a service, you may also be opening yourself up
to these records being obtained by insurance companies or other outside
sources. Once those records are out there, itís very hard to get them
How to Protect Your DNA
While itís useful to know what laws protect
your genetic information and when itís at risk, it is perhaps more important to
know what you can do to ensure that your genetic information is
kept safe and confidential, unless you choose to share it, that is.
Always know the privacy policies of
genetic testing companies.
Getting genetic testing done through
a private company is increasingly common, as prices have plummeted and
access to these companies has increased. While these businesses do provide
an opportunity to learn more about your health, they also pose a risk to
your privacy if youíre not careful. Before submitting any samples to a
check out the business through the Better Business Bureau and TRUSTe.
Know your rights under the law.
outlined the major legislation that protects your genetic privacy above,
but it doesnít hurt to do additional research as well. The better you know
what your rights are under state and federal laws, the better you can
protect your personal and private health information. For additional
information on privacy as a patient, learn more about HIPPA, which while
not DNA specific does ensure that knowledge of your health issues canít be
Donít freely give out health
you are protected under law, do not share your personal family history or
genetic information with others. In some cases, like when applying for
life or long-term care insurance, this information can be used to
discriminate against you. While GINA and other laws may protect you, there
is no guarantee that sharing your genetic information wonít result in
discrimination, so itís best to always keep it to yourself unless
Keep records about your DNA in a
If you opt for DNA testing of any kind, especially that which looks at
your risk for certain conditions, make sure to keep these records in a
secure location that canít be accessed by others. While you hardly need to
worry about thieves, you do want to keep anyone who may be snooping around
your home from finding out private information about you.
Ensure that any research studies you
participate in will keep data confidential.
those suffering from certain diseases will choose to participate in
research studies that collect genetic data. This can be an incredibly
beneficial way to make strides in understanding and treating these
conditions and others like them, but it does compromise
DNA privacy. While not
everyone will care about this, those who do will want to ensure that any
studies requesting this kind of information will keep it
and, in some
cases, you may even want to request that genetic material not be retained
after the study is complete.
have to agree to take part in a study for genetic information to be
gathered on you. Thatís why you should ask your doctor or health care
professional if certain medical procedures will require genetic testing
and find out in advance what his, her, or the medical facilityís policy is
on personal genetic information.
Seek legal recourse. If you
believe your genetic information has been compromised in a way that
violates your personal privacy and the law, contact a lawyer who can help
you address these issues. You can also file a complaint with federal and
state agencies for certain violations as well.
Much of the legislation and public policy
regarding genetic privacy is still in its early stages, but as technology
evolves and genetic testing becomes increasingly more common, how genetic data
is handled, who has access to it, and the privacy rights of individuals will
become increasingly more important. If you havenít considered the risks posed
by unsecured DNA information before, now is the time to look into
and ensuring that
your information isnít being used, shared, or stored in ways that put your
privacy at risk. While you may never face a
with regard to
your genetic privacy, it never hurts to be cautious and know your rights.
Article Created By: BackGroundCheck.org
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