On April 7, 2004, Police Headquarter announced the commencement of a project regarding the search for missing children involving the collection of DNA. Samples of children’s DNA who are presently under the care of protection facilities throughout the country and parents with missing children would be used to establish the DNA Database. This project is not new, there has been an ongoing effort since 2001 by the Department of Health and Human Services in conjunction with the Supreme Public Prosecutor’s Office to promote the missing children project using a DNA Database. However, many civil organizations supporting the protection of human rights have urged caution, expressing concern about the potential for human rights violations. Even if there is a humanitarian aspect to this project as an aid in searching for missing children, protocols must be adhered to in order to protect the public from possible abuse of such a system.
Of primary concern is the lack of any laws supporting either the establishment or management of the DNA database promoted by the Police Headquarters. DNA samples from children who are presently missing, as well as samples of their parents’ DNA, is already being carried out at the discretion of law enforcement without specific legal authority to analyse, use, and store the DNA samples in a database. Issues have been raised that the terms and conditions relating to the authority and responsibility of individual participants of the project, including the Police, public welfare foundations and the National Institute of Scientific Investigation (NISI) are vague and lack clear details as to how they would be implemented.
There is serious concern regarding the project’s handling of DNA, which itself enables extraction of genetic information of the most sensitive personal nature from an individual. At present, there is only a case-by-case relationship existing absent clear legal responsibility as to the monitoring and management of such a database.
In response to valid concerns raised by human rights and social organizations of personal information possibly being abused or mishandled, Police Headquarters continue to stress the importance of the DNA database project and its role in searching for missing children as well as the technological superiority of NISI in attempts to win support and public confidence. However, there have been many instances where the Police collected and shared fingerprint information unfairly or collected and managed DNA samples of suspects. With this in mind, there is no guarantee that the Police force would not abuse DNA information which would be stored in a database established without any legal oversight.
Moreover, as this project had been initiated in 2001, the government has not yet demonstrated any willingness to address these concerns. It has not even allowed for public discussion or prepared relevant regulations. Rather, internal conflicts such as the adbrupt change of the main body for the project have occurred. Police Headquarters is the newly nominated main body of the project and was given budget allocation only 2 months after the decision. Oversight of this project is questionable without any detailed plan or preparation.
The Department of Health and Human Services are urged to immediately take steps to establish legal guidelines based on mutual agreements regarding the DNA database. Even in the Bioethics and Biosafety Act, which was recently enacted for the safety and ethics of life engineering activities, management and supervision issues have not been properly addressed. With this history, it is difficult for human rights and social organizations to rely on the main body of the project and the government’s word that abuse will not occur.
The immediate and urgent need for the government to enact laws in relation to the DNA Database cannot be overstated. The main bodies of the project including the Police Headquarters have a clear obligation to the public to provide legally binding solutions in relation to the multitude of concerns raised by human rights and social organizations. Furthermore, Police Headquarters should publicly express its position regarding the DNA Database expansion plan.
April 20, 2004
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Appendix 1 – Statement of human rights and social organizations in relation to the DNA Database establishment project by the Police force.
Human rights and social organizations demand all relevant law shall include the information regarding the legal basis for DNA collection as well as DNA database management including supervision of such a database. Additional protection measures for personal genetic information is also critical and must be included.
1. Other Subjects to be included to be addressed in the law include:
The subject and objectives of DNA information collection and applications;
whose DNA information will be collected and purposes for such collection as well as application should be clearly stated; and it is imperative that the principle of minimization of the subject for collection should be adhered by, such as collecting DNA information only when a proper identification cannot be performed using conventional means.
Consent
Informed consent from parents of missing children should be obtained together with a proper explanation as to how the information is to be used. The consent form should include items listed below and should be in a document format. Furthermore, if the subject is an under-aged person, the consent should be obtained from not only the subject but also his/her legal guardian.
1) Purposes of DNA information collection
2) Information regarding management and storing of genetic information and of any remaining unused DNA or residue
3) Predictable dangers and benefits from collecting DNA information
4) Confidentiality assurance
5) Consent withdrawal
Specific Individual Authority and Responsibility of the Project’s Body
The law should address issues relating to DNA information collection, analysis, storage and application, and the authority and responsibility of the subject who utilizes such information. It is imperative each and every procedure be clearly documented.
Accessibility to an individual’s own information and ability to make corrections
Every citizen must be allowed accessibility and ability to make corrections to various matters in relation to management and application of his or her own genetic and DNA information database.
Storage and disposal of any remaining unused DNA or residue
The law must include details as to the storage and disposal of any remaining unused DNA or residue. Moreover, it should include clearly stated policy mandating an immediate disposal of the DNA residue when requested by the owner. Recently, the Police force announced disposal of any DNA residue would be conducted immediately after the analysis. This must be addressed by applicable law.
Protection of DNA information
In order to minimize as much as possible, if not entirely prevent, the misuse and abuse of DNA information, the law must include sections regarding stiff penalties to be imposed on every situation where DNA information is misused or abused.
External 0versight, management and supervision mechanism
An external organization other than the main body of the project should consist of personnel who are nominated by human rights social organizations along with missing children’s organizations. This external organization will have oversight and other management control as well as supervision of DNA information and shall address the following issues:
1) Foundation of external oversight management and its functions (organization which has a control over the project)
2) Organization of a board setting limits as to the participation of the main bodies of the project such as the Police, the Department of Health and Human Services and Welfare organizations
3) Management and Authority
2. Potential concerns regarding the DNA Database raised by human rights social organizations
Since 2001, government bodies have been promoting the establishment of a DNA Database for proving one’s identity. Human rights and social organizations have continuously pointed out various problems with such a DNA database, including the Police Headquarters being in control of such a database. The government must provide institutional solutions in response to concerns of human rights social organizations, not empty promises.
The potential of misuse and abuse of any remaining unused DNA or residue
DNA contains genetic information which is the most personal information an individual possesses. Because of this, protection of confidentiality and prevention of discrimination are of utmost necessity. It also requires special care as a DNA analysis of a certain person can identify the genetic status of his or her family. Due to these special characteristics, personal genetic information has been protected by law in except in unusual circumstances.
There is little difference in genetic information collected for proving an identity from genetic information collected for medical purposes. Personal genetic information which can be used other than proving identification can be collected from the process of the DNA Database establishment since the only difference between the DNA used for proving identification and DNA used for other information analysis is a specific part in the sample DNA. These parts reside in the same DNA strip sample. Therefore, various types of information can be gathered through the collected DNA sample, if intended. In normal procedures, DNA samples which have undergone analyses are stored for future verification purposes. Hence, there is a high possibility of misuse and abuse of the DNA residue other than analysis for proving identification. This would violate human rights in the absence of strict regulations regarding analysis, application and storage of DNA samples. Therefore, disposal of any remaining unused DNA or residue should be bounded by the law.
Future expansion of a DNA Database
The Police have announced the DNA Database would be expanded to incorporate information not only of missing children but also disabled people with mental retardation and senile dementia. Additionally, they would make DNA testing compulsory for children at protection facilities. The DNA Database project has a characteristic which increases the effectiveness as the input range expands. Hence, once such a DNA Database is established and input subjects are confirmed, it is likely such a database would be connected to and shared with other similar databases. This has been demonstrated in other countries where a DNA Database for proving identification exists. These existing databases are continuously being expanded upon. In Korea, there currently exists a Missing Children’s Database, a criminal’s Database, a dispersed family’s Database and a private Database, all of which are either in existence or being developed.
Worth noting, since the 1990’s, the Police and Prosecutor’s offices have been preparing a DNA Database for proving identification as well as governing and using their own DNA Database. The Police Headquarters, which is promoting the DNA Database in such situations, must clearly express its perspective regarding any possible expansion of such a DNA Database. If the Police Headquarters planns to cover only long-term missing children in this project, they should clearly state that they would not expand the existing DNA Database.
Voluntary consent
In the application of personal genetic information, the subject’s consent restricts the minimum procedure that should be performed. However, for DNA collection of under-aged teenagers who may not possess adequate decision making ability, this procedure may not be properly followed. A policy is needed which will have legally binding power based on the review of consenting procedures, in order to minimize any possible human rights violations regarding providing genetic information to a government authority.
Issues regarding setting priorities in searching for missing children project
In the ‘Policy Recommendations from Citizen Jury on Use of Genetic Information’ published in 2001, the jury has acknowledged good cause of using genetic information in searches for missing children. However, they have also questioned whether this should be preferred to any other means performed in searches for missing children. Considering we are in a situation where precautionary measures and governing of organizations for missing children are very poor, we have concluded that the introduction of DNA Database does not serve the best interest of the public as a mean to assist searches for missing children. The Police Headquarter should consider the problems and present solutions of the existing system of searching for missing children before they start any new projects. Discussion of DNA Database establishment issues can be conducted during such time.
No Related Act for DNA Database
Currently in Korea, no law exists managing and supervising the genetic information bank established by the government body or for the provisions of protecting personal genetic information from such a database. Although the Bioethics and Biosafety Act has been enacted in attempting to incorporate matters relevant to applications of personal genetic information, it contains an exclusion section. It is extremely troubling that this section allows for an exemption of management and supervision from the president of the Department of Health and Human Services when the government body performs DNA testing or establishes a DNA information bank. Therefore, we are currently in a situation where there is no legal system which can govern the collecting activity of personal genetic information operated by the Police Headquarter.
It is absolutely imperative that relevant law with binding power must be enacted before any and all forms of DNA databases and genetic bank establishments are developed for proving identification by governmental authorities.
2004-04-19
