1. DNA DATABANKS
Eva Gomes Paz nº

2. What is special about dna?
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.
DNA is useful to identify an individual because everyone’s genetic code is thought to be unique, unless they have an identical twin.
Biological identifiers such as DNA, fingerprints, iris scans and digital photographs are known as ‘biometrics’.
DNA and fingerprints can be left wherever a person goes: for example, on a glass or cup that they have been drinking from.

3. 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.

4. What role can dna play in solving crimes?
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).
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.

5. 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.
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.

6. 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.

7. 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.

8. 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.

9. 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.

10. Retention of DNA profiles, samples and other data
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?

11. Is it ethical to have a national DNA database?
The National DNA Database has proved to be a valuable tool in the fight against crime.
However, many people are against the idea of extending the DNA database because of the potential threat it has to our privacy.
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.

12. 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.

13. 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.

14. 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.

15. 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.

16. DNA IDENTIFICATION ACT OF 1994
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.
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.
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.

17. 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.

18. some of the pros and cons of having a national DNA database.
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?

19. 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.

20. Is keeping a national DNA database financially viable?
YES NO
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.
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.

21. Do national DNA databases take into consideration an individual's human rights?
YES NO
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.
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.

22. Is the privacy of the individuals on a national DNA database protected?
YES NO
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. 
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.

23. Is appropriate consent given for the details of individuals to be used for other purposes?
YES NO
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.
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.

24. 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.
Two mechanisms for enhancing privacy and confidentiality that have received recent attention include Certificates of Confidentiality and the Genetic Information Non-Discrimination Act.

25. 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.
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.

26. THANK YOU FOR YOUR ATTENTION !