DNA
DATABANKS
Eva Gomes Paz nº 004197
WHAT IS SPECIAL ABOUT DNA?
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DNA is a chemical that occurs inside every cell of a person’s body. The DNA is
contained in 22 pairs of structures known as chromosomes, shaped like an X,
plus an extra pair – the sex chromosomes – which determine whether
someone is male or female.
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DNA is useful to identify an individual because everyone’s genetic code is
thought to be unique, unless they have an identical twin.
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Biological identifiers such as DNA, fingerprints, iris scans and digital
photographs are known as ‘biometrics’.
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DNA and fingerprints can be left wherever a person goes: for example, on a
glass or cup that they have been drinking from.
DNA differs from fingerprints in two main ways:
• Because DNA has a biological function, some of the information in a person’s
DNA may be relevant to their health or other physical characteristics, such as
their eye colour.
• Because DNA is shared with relatives, a person’s DNA can be used to help
identify their parents or children and perhaps more distant relatives.
However, DNA profiles used by the police are not based on the whole sequence
of someone’s DNA, but only on parts of it. This means that the information
contained in them is more limited than that contained in a person’s whole
genetic make-up.
WHAT ROLE CAN DNA PLAY IN SOLVING CRIMES?
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People can leave traces of their DNA at a crime scene because it is inside every
cell of their body. DNA can be extracted from blood, semen, saliva or hair roots
left at a crime scene using a chemical process. Tiny amounts of DNA can
sometimes be extracted from a single cell – such as cells shed from someone’s
skin when they touch an object – using new sensitive techniques (known as
‘low copy number’ DNA).
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DNA profiles are not unique but the probability that two people’s DNA
profiles match by chance is low. If the DNA profile from an individual
matches the DNA profile from a crime scene it is therefore highly likely (but
not certain) that the blood, semen or saliva left at the crime scene came
from them.
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If the police have a number of suspects for a crime a DNA match can help them
to identify who was at the crime scene and who wasn’t. The value of this
evidence in solving the crime will vary.
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When DNA samples are collected at a murder scene, many DNA matches
will occur with DNA from the victim or with others who may have been there
earlier in the day, not with the perpetrator of the crime. However, these
matches can still help to provide important clues that will help to solve the
crime.
WHAT IS A DNA DATABANK?

DNA samples, for example from cheek swabs, can be analysed to produce a
DNA ‘profile’. This is a series of 20 numbers plus an indicator that shows the
gender of the person. DNA profiles can be used as evidence in criminal
investigations when matched to samples of material taken from crime scenes.
WHAT ARE THE CONCERNS ABOUT DNA DATABANKS?

The retention of DNA profiles and samples taken from crime scenes can be
readily justified because they might be useful if an investigation needs to be
re-opened in the future (either to convict a perpetrator, or to exonerate an
innocent person). The major human rights concerns relate to the widening of
the group of individuals (not crime scene samples) from whom DNA can be
taken and then retained.

DNA is not foolproof so procedures need to be in place to ensure that
matches between individuals’ DNA profiles and stored DNA profiles do not
result in miscarriages of justice.

These concerns are exacerbated by wider problems within many criminal
justice systems, which may result in racial, religious or political bias in whose
DNA and personal information is kept, or insensitivity to the impacts on
vulnerable people, including children and the mentally ill.

The benefits of DNA databases in solving crimes must be weighed against
these downsides.
DNA DATABANKS, PRIVACY AND HUMAN RIGHTS

The retention of DNA and fingerprints from an individual on a database therefore
allows a form of biological tagging or ‘biosurveillance’, which can be used to attempt to
establish where they have been.

These concerns do not relate solely to the storage of DNA profiles and samples, but also
to the other information that may be kept.

For example, if DNA is collected on arrest and retained indefinitely, there is additional
information kept in the police records of arrest and in the samples which may be stored
in the laboratories which analyzed them. The former may be accessed to assess
someone’s suitability for a job or visa, leading to potential erosion of their rights purely
as a result of being arrested, even if they have not been convicted by a court. The latter
contain additional personal information, such as whether someone is a carrier for a
genetic disorder, that could be accessed and revealed if the sample is re-analyzed.
RETENTION OF DNA PROFILES, SAMPLES AND OTHER DATA
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Because of the impacts on privacy and human rights, one of the most
contentious issues has been the question of when biological samples, DNA
profiles and other police records can be retained.
Some countries, such as Germany, destroy each individual’s DNA sample as
soon as the computerised DNA profile that is needed for identification
purposes has been obtained from it.
This protects privacy by preventing the sample from being re-analysed to
obtain personal health information.
However, other countries retain samples, in some cases indefinitely.
How long individuals’ DNA profiles and other personal information should be
stored on computer databases?
IS IT ETHICAL TO HAVE A NATIONAL DNA DATABASE?
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The National DNA Database has proved to be a valuable tool in the fight
against crime.
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However, many people are against the idea of extending the DNA database
because of the potential threat it has to our privacy.
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The database can already be used for some genetic research studies and to
identify partial matches, where close genetic relatives can be identified from
the DNA profiles of relatives on the database.
HUMAN GENETIC RESEARCH DATABASES

The term ‘human genetic database’ may refer to many kinds of collections of
genetic samples and genetic and other health information. Genetic samples
contained in research collections can include a wide range of human biological
materials such as extracted DNA, body fluids, cells and sections of tissue. The
information in a human genetic database may include molecular genetic data,
standardized clinical data, genealogical data, and information on the health,
lifestyle and environment of an individual.

The term ‘human genetic research databases’ is used to refer broadly to
collections of genetic samples and genetic and other health information, in any
combination, which have been established for the purpose of human research.

Other terms such as ‘biobank’, ‘gene bank’ and ‘tissue bank’ have also been
used to refers to as human genetic research databases.
RESEARCH VALUE
Much of the research value of human genetic research databases is derived
from linkages created between clinical, personal and genetic information.
Examining these linkages is an important tool in identifying the genetic causes
of disease and in other forms of human genetic research.
 Different forms of genetic research can be conducted using human genetic
databases.
These include:
• linkage studies to identify the gene sequences associated with inherited
diseases.
• association studies to find correlations between a disease and a genetic
change where there is no obvious pattern of inheritance.
• genetic epidemiology studies of the interaction between genes and
environment.
• pharmacogenetic studies to determine if there is a genetic basis for certain
adverse reactions to drugs.
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TYPES OF HUMAN GENETIC RESEARCH DATABASES

Human genetic research databases vary in scale from limited collections,
created for a specific study or series of studies, to major population databases
that store samples and information from very large sections of a population
and are used for different studies over many years. Research databases may be
established by research organizations for use in their own studies or they may
be established on a commercial basis for sale to interested researchers or
research organizations.

In Australia, most human genetic research databases have been
established by research organizations for use in their own studies.

A different approach to the development of a major genetic research
database has been taken in the United Kingdom.
INFORMED CONSENT

Informed consent is a cornerstone of the ethical conduct of research involving humans.
Based on the ethical principle of respect for persons, the goal of informed consent is to
ensure that subjects are aware of the risks and potential benefits and make a voluntary
decision about participating in the research.

Research involving human biological materials consists of two distinct steps: (a) the
collection and storage of specimens and data; and (b) the use of stored specimens and
data for research.

It is important for prospective research participants to understand what they will
experience if they agree to take part. Describing the procedures as sequential steps
may make the information easier to understand.
DNA IDENTIFICATION ACT OF 1994
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The DNA Identification Act of 1994 authorized the establishment of a national
index of: (1) DNA identification records of persons convicted of crimes, (2)
analyses of DNA samples recovered from crime scenes, and (3) analyses of
DNA samples recovered from unidentified human remains.
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In addition, it specified several standards for those laboratories that contribute
profiles to the national index system, including proficiency testing
requirements for DNA analysts and privacy protection standards related to the
information in the national index system.
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Finally, it established criminal penalties for individuals who knowingly violate
the privacy protection standards, and provided that access to the national
index system was subject to cancellation if the quality control and privacy
requirements were not met.
JUSTICE FOR ALL ACT OF 2004

This Act instituted material changes to the DNA Identification Act of 1994,
including the:
• creation of a new indicted persons index.
• expansion of the offenses for which federal and military offender samples
are collected.
• enhancement of the criminal penalties for unauthorized use of NDIS.
• authorization of one-time keyboard searches by all NDIS participants of
samples not normally included in NDIS (except for voluntarily submitted
elimination samples).
• deletion of the separate requirement for semiannual external proficiency
tests (although it retained the separate requirement for biannual external
audits).
• requirement for state and local forensic laboratories to be accredited by a
nationally recognized program within 2 years of enactment (October 30,
2006).
• requirement for the FBI to report to Congress any plans to change the
"core genetic markers" 180 days prior to that change taking effect.
SOME OF THE PROS AND CONS OF HAVING A NATIONAL
DNA DATABASE.
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Is a national DNA database useful for police investigating crimes?
Is keeping a national DNA database financially viable?
Do national DNA databases take into consideration an individual's human
rights?
Is the privacy of the individuals on a national DNA database protected?
Is appropriate consent given for the details of individuals to be used for other
purposes?

Is a national DNA database useful for police investigating crimes?
YES
NO
• The information derived from each DNA profile can
be a powerful tool in the fight against crime. If a match
is made between a DNA profile at a crime scene and a
DNA profile on the database, it can help police to
identify a possible suspect quickly. They can then use
this information as strong evidence to demonstrate an
individual is guilty of a crime.
• Searching the database to find a DNA profile match
helps identify a suspect in around 60 per cent of cases
in the UK.
• Information can be shared between databases held in
different countries to help identify criminals who
commit crimes in more than one country.
•It is easier to travel internationally enabling potential
criminals to escape police and conviction. A DNA
database may help to keep track of criminals around
the world.
• A DNA database of everyone may make it easier for
police to identify missing people and unidentified
remains.
•There is little evidence to support that more crimes
would be solved if a national DNA database is
extended to contain samples from people who have
not previously been convicted of a crime.
•If a national DNA database contains more samples it
may increase the possibility of false matches being
made and innocent people being arrested.
•Because samples are stored and compared against
DNA collected at crime scenes, police may be more
likely to pursue crimes committed by members of
overrepresented groups. This may lead to
discrimination while underrepresented groups may
more easily evade detection.
•If police can’t find a database match for DNA taken
from a crime scene, they may then look at partial
DNA matches. This could lead to innocent relatives of
criminals being wrongfully pursued for a crime.

Is keeping a national DNA database financially viable?
YES
•The time and money saved through
identifying suspects quickly through DNA
evidence greatly outweighs the financial
expense of keeping a DNA database.
• Having a larger database that covers
the whole population is far more useful
and cost effective than a smaller one that
only covers a small number of
individuals.
NO
•Maintaining a DNA database is
hugely expensive. The staff, facilities
and equipment used to process and
manage DNA samples costs large
amounts of money.
•Expanding the DNA database to
include a DNA sample from everyone
in the country would require a lot of
additional investment of taxpayers
money.

Do national DNA databases take into consideration an individual's human
rights?
YES
•The Forensic Genetics Policy Initiative
seeks to set international standards for
DNA databases that respect and protect
human rights.
• We all have the right to live in a society
free from crime.
NO
• Keeping a DNA database is seen by
many as a further infringement of
privacy and human rights.
•It is debatable whether the benefits
to society of having a national DNA
database outweighs an individual's
right to privacy.

Is the privacy of the individuals on a national DNA database protected?
YES
• Personal information is already held by
groups in the private sector, if people can
trust the private sector then they should
be able to trust the Government.
• In 2010, the UK Government pledged to
make changes to the length of time DNA
samples are kept in the UK National DNA
Database. These were included in the
2012 Protection of Freedoms Act. These
changes ensure that the DNA (and
fingerprints) of individuals arrested but
not convicted of an offence is retained
for a maximum of 5 years.
NO
•Individuals who provide their own
personal information to the private
sector, do so voluntarily and usually in
exchange for a service. An individual has
no choice on whether their DNA sample is
included in a national DNA database.
•Currently there are no comprehensive
privacy regulations that would prevent
governments from sharing DNA profiles
with other groups, such as insurance
companies.
•DNA samples are rarely destroyed
meaning that the information derived
from a sample could potentially be
accessed by anyone.
•The information contained in DNA is
limitless.
Information
about
hair
colour, eye colour and genetic
diseases? can all be found in our DNA.

Is appropriate consent given for the details of individuals to be used for other
purposes?
YES
• The DNA Identification Act of 1994
explicitly allows database records to be
made available for research and
development as long as all personally
identifiable information is removed.
NO
• Surely the DNA itself is personally
identifiable information? We can find
out all kinds of personal data, from eye
colour to risk of genetic disease, from
our DNA.
• Requests to access the database may
be for purposes for which the data was
never originally intended and therefore
individual consent has, almost certainly,
not been given.
• Searching the DNA database for partial
matches raises concerns for the privacy
of the relatives of people who are on the
database.
•There is the potential for the
information in the DNA database to
be misused by the Government, security
services, police forces or criminals. For
example, it may reveal private
information, such as paternity.
PPROTECTING PRIVACY AND CONFIDENTIALITY

Protecting the privacy of individuals who contribute specimens for genetic and
genomic research and maintaining the confidentiality of associated health
information and research data is critical—as an ethical obligation and for the
success of the repository.

Biospecimen collections should establish clear policies and procedures for
protecting identifiable information, which may include data encryption,
coding, establishing limited access or varying levels of access to data by those
associated with the collection, use of nondisclosure agreements, and use of an
honest broker system. A description of these protections is a required element
of informed consent.
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Two mechanisms for enhancing privacy and confidentiality that have received
recent attention include Certificates of Confidentiality and the Genetic
Information Non-Discrimination Act.
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Certificates of Confidentiality are issued by agencies of the federal government
to protect identifiable research information from forced disclosure in any legal
proceeding. By protecting researchers and institutions from being compelled
to disclose information that would identify research participants, Certificates
are intended to help achieve the research objectives and promote
participation in studies.
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The Genetic Information Non-Discrimination Act (GINA) is a Federal law that
prohibits discrimination in health coverage and employment based on genetic
information. More specifically, it prohibits group and individual health insurers
from using a person’s genetic information in determining eligibility or
premiums; it also prohibits employers from using a person’s genetic
information in making employment decisions such as hiring, firing,
promotions, and job assignments.
To sum up! Researchers should be careful not to understate or overstate
the risks of genetics, and also not to imply that confidentiality can be
guaranteed.
THANK YOU FOR YOUR
ATTENTION !