Centre for Genetic Origins of Health and Disease

Frequently Asked Questions

Frequently Asked Questions

1. What is the Western Australian DNA Bank?
2. Who set up the WA DNA Bank?
3. Why do we need the WA DNA Bank?
4. Who will use the WA DNA Bank?
5. What are the benefits of storing DNA in the WA DNA Bank?
6. Where is the WA DNA Bank located?
7. Is the WA DNA Bank secure?
8. Can the general public visit the WA DNA Bank?
9. Can I tour the facility?
10. How is DNA collected for the WA DNA Bank?
11. Does the WA DNA Bank collect DNA without the donors consent?
12. Is the DNA labelled with identifiable information (eg a person's name) and can any private information about the donor be accessed from the DNA sample stored in the WA DNA Bank?
13. Can insurance companies ask the WA DNA Bank for personal and private information about the donor?
14. Can the Police access DNA in the WA DNA Bank for criminal investigations or forensic testing?
15. Can anyone use the DNA for research purposes?
16. Could the DNA be sold for commercial purposes?
17. Can I access my own DNA if it is stored in the WA DNA Bank?
18. Can I request my DNA be removed from the WA DNA Bank?
19. Does the WA DNA Bank perform paternity testing?
20. Can a member of the public or a medical researcher request the WA DNA Bank to supply a DNA sample for paternity testing?
21. Does the WA DNA bank perform genetic testing for common or rare diseases?
22. Will the WA DNA Bank provide the donors with any information or results that arise from research carried out on their DNA?
23. How is the WA DNA Bank governed?
24. If I have any questions who should I contact?

Useful links 

1. What is the Western Australian DNA Bank?
The WA DNA Bank (WADB) is a storage facility for DNA that has been collected from donors who have participated voluntarily in one or more medical research projects. The WADB itself does not recruit these donors, but stores DNA for medical researchers who have collected a DNA sample from consenting donors (usually from blood or saliva samples).

In addition, the WADB processes and stores components of blood including buffy coats, serum, plasma and clots. It also extracts DNA and RNA from a variety of sample types. 

It is not mandatory for WA medical researchers to use the WADB to store DNA - if they have suitable facilities they may wish to store the DNA themselves. 


2. Who set up the WA DNA Bank?
Funds for the establishment of the WA DNA Bank (WADB) were obtained from the National Health and Medical Research Council Enabling Grant scheme in 2006 by the following people:

  • Professor Lyle Palmer (formerly of the University of Western Australia, now at the Ontario Institute for Cancer Research),
  • Associate Professor John Beilby (PathWest),
  • Associate Professor Frank van Bockxmeer (Royal Perth Hospital), 
  • Dr Nik Zeps (Sir Charles Gairdner Hospital),
  • Professor James Semmens (previously at the University of Western Australia, now Curtin University), 
  • Professor Fiona Stanley (Telethon Institute for Child Health Research),
  • Professor Peter Klinken (Western Australian Institute for Medical Research),
  • Professor Ian Constable (Lions Eye Institute) and
  • Professor Frank Christiansen (Royal Perth Hospital).


3. Why do we need the WA DNA Bank?
A key aim of the WA DNA Bank is to facilitate access to human DNA collections in WA by the broader Western Australian and Australian research communities with appropriate ethics approval. It is hoped that the infrastructure established by the WA DNA Bank will greatly increase the opportunities for Australian researchers to access both large population-based genetic epidemiology resources and smaller research datasets held by individual research groups in Western Australia. By encouraging more medical researchers to use the WA DNA Bank facilities we anticipate that significant new initiatives and collaborations relevant to gene discovery, clinical and genetic epidemiology, new therapies and preventive medicine will ensue at the national and international level.


4. Who will use the WA DNA Bank?
Any bone fide researchers conducting medical research approved by a properly constituted human research ethics committee can use the WA DNA Bank facility (they must notify their own institutional human research ethics committee of their plans to do so).


5. What are the benefits of storing DNA in the WA DNA Bank?
The WA DNA Bank provides a 'one stop shop' for any medical researcher wishing to extract and store DNA from human biological specimens. DNA is extracted at cost from any biological specimen (usually blood or saliva) using standardised protocols and stored at ultra cold temperatures in air-conditioned highly secure cryofacilities that are monitored 24 hours a day.

In addition to extraction and storage, the WA DNA Bank provides additional services to medical researchers by

  • preparing the DNA for further laboratory analysis (such as diluting to specific quantities, plating out multiple samples etc);
  • transporting to laboratories within the metropolitan region;
  • arranging to courier DNA to other laboratories;
  • barcoding, quantitation and re-labelling of historically stored DNA samples and so on.

Not all medical researchers have access to the laboratory equipment and personnel required to extract and store DNA in a safe and secure manner thus the WA DNA Bank provides a convenient and useful service for anyone who wishes to use the facility, whether they have their own infrastructure or not. The WA DNA Bank can also process and store plasma and serum and also RNA by request.


6. Where is the WA DNA Bank located?
To maximise the safety of the DNA samples (for example in the event of fire or flood) the WA DNA Bank is located at two geographically separated sites. All DNA samples are split into two equal aliquots for dual site storage. Facility #1 is located at the Queen Elizabeth II Medical Centre in Nedlands, Perth and Facility #2 is located at Royal Perth Hospital in the Perth central business district. The DNA is stored under the same standardised conditions at each site. Arrangements for storage of the second DNA aliquot at an alternative site may be considered by the WADB but only if minimum standards can be met (please contact the Manager to discuss first). Currently, plasma, serum and RNA are not dual site banked –storage is at Facility #1 only.


7. Is the WA DNA Bank secure?
Yes. The WA DNA Bank is a secured facility (at both sites) that can only be accessed using swipe-card or key pad technology by authorised personnel. The number of persons with the authority to enter is limited to a core group and entry and exit is monitored at all times.


8. Can the general public visit the WA DNA Bank?
No. The WA DNA Bank is not open to the general public.


9. Can I tour the facility?
In general the facility is not available for tours, however individual visits may be arranged if you are a medical researcher who wishes to use the facility.


10. How is DNA collected for the WA DNA Bank?
DNA can be extracted from any human biological specimen, however the most common sources are blood and saliva. If the WA DNA Bank performs the DNA extraction procedure the biological specimens are sent to the WA DNA Bank laboratory staff in the PathWest laboratories at Royal Perth Hospital (by arrangement). If the DNA has already been extracted it can be transferred to the WA DNA Bank by courier or collection in person by WA DNA Bank staff (by arrangement). All incoming DNA samples are re-labelled and quantitated using UV spectrophotometry according to standardised WA DNA Bank protocols.


11. Does the WA DNA Bank collect DNA without the donors consent?
As noted in Point 1 the WA DNA Bank does not recruit donors themselves - the DNA originates only from research projects approved by institutional human research ethics committees. Unless approved otherwise by the ethics committee, the DNA could only be collected with the donor's consent.


12. Is the DNA labelled with identifiable information (eg a person's name) and can any private information about the donor be accessed from the DNA sample stored in the WA DNA Bank?
No. The information stored on the DNA samples is a unique sample identification (ID) code that does not include a person's name. This unique 10-12 character code is encrypted in a 2-dimensional barcode. The barcode itself does not contain any linkable code, such as a medical record number, that would allow the donor to be traced via other database systems when scanned, therefore the code is meaningless to anyone other than the medical researcher and the associated staff with authorized access to the information because the ID is unique to each particular study
The barcode data is stored on secure, network restricted servers located within a secure physical environment. Access to these servers is protected by multiple firewalls, user authentication, authorisation schemes and digital certificates. Secure data encryption is also enforced for all network data transfer. Regular data backups are performed and RAID technology is used to ensure data availability and high performance even in the event of any hard disk failure. The electronic security exceeds all relevant Australian Security Standards.


13. Can insurance companies ask the WA DNA Bank for personal and private information about the donor?
No. Even if insurance companies wished to obtain information about the donors it would not be possible to obtain this from the DNA sample itself. As the barcode data is encrypted and the accompanying data is inaccessible to non-authorised personnel it is not possible (or permissible) to provide this data to any unauthorised persons, which includes insurance companies.


14. Can the Police access DNA in the WA DNA Bank for criminal investigations or forensic testing?
The WA DNA Bank is not a facility for storing DNA collected from crime scenes. Nor is it a facility for storing DNA collected from private citizens unless they have participated in a research study led by medical researchers who have obtained all the appropriate ethics clearances to conduct the study. The WA DNA Bank is bound by the Commonwealth Privacy Act which severely restricts access by any other group such as the police (or employers, insurers, courts). The WA DNA Bank may be required to release DNA by law (for example, if requested by a court order, or emergency situations where information is needed to stop a serious or imminent threat to someone's life, health or safety).


15. Can anyone use the DNA for research purposes?
No. The medical researcher who has deposited the DNA is responsible for ensuring the DNA is used strictly according to the guidelines under which it was collected. Donors who have consented to participate in a research study will have either agreed for their DNA to be used solely for a specific study (in which case the DNA cannot be used in other projects) or the donor may have readily agreed for their DNA to be used in multiple research projects without the need to consent every time. In the event the donor has agreed to the latter, the DNA may be shared between collaborating medical researchers but only if both parties have ethics approval to conduct the research.


16. Could the DNA be sold for commercial purposes?
The WA DNA Bank does not sell DNA nor does it does release DNA without authorisation from the medical researcher who has deposited the DNA in the bank. In authorising its release the medical researcher must abide by the rules and conditions imposed by their institutional ethics committee, which may include a ban on the DNA being sold for commercial purposes.


17. Can I access my own DNA if it is stored in the WA DNA Bank?
No. Your DNA has been collected strictly for medical research purposes only and the WA DNA Bank cannot release it back to you personally for any reason. To better understand the ethical guidelines under which medical research is conducted you may wish to access detailed information from the National Health and Medical Research Council.


18. Can I request my DNA be removed from the WA DNA Bank?
Yes. If you have participated in a study and wished to withdraw from that study you would need to contact the study coordinator directly. The study coordinator would then contact the WA DNA Bank in writing and request the sample be withdrawn from the bank and destroyed. The WA DNA Bank cannot destroy any DNA samples until authorized to do so by the study coordinator in writing.


19. Does the WA DNA Bank perform paternity testing?
No. The WA DNA Bank does not perform paternity testing (or any other genetic testing). The WA DNA Bank cannot provide information about paternity testing, nor can it recommend one particular paternity testing service provider over another. If you require information about paternity testing you are advised to contact the service providers available in your state (or Australia-wide) directly.


20. Can a member of the public or a medical researcher request the WA DNA Bank to supply a DNA sample for paternity testing?
No. The WA DNA Bank does not release DNA without authorisation from the medical researcher who has deposited the DNA in the bank. The medical researcher would not, nor should not, request the DNA be used for paternity testing as this would breach the stringent ethics rules applying to their study.


21. Does the WA DNA bank perform genetic testing for common or rare diseases?
No. The WA DNA Bank itself does not perform testing for genetic conditions or for any diseases. If you require information about genetic testing you are strongly encouraged to investigate the services available in your state and contact them directly to discuss. If you live in Western Australia you can contact the Genetic Services of Western Australia. Additional information may also be obtained from the Genetic Support Council WA.


22. Will the WA DNA Bank provide the donors with any information or results that arise from research carried out on their DNA?
The WA DNA Bank itself does not provide any information or results that have arisen from research carried out on the DNA stored within the facility. If you are participating in a research study you would have been given detailed guidelines about the study when you consented to participate, including how information arising from the research was to be conveyed back to the participants. If you are unclear about any aspect of the study you were (or are) involved in you are strongly encouraged to contact the study coordinator directly to answer your queries or to discuss any concerns you may have.


23. How is the WA DNA Bank governed?
The WA DNA Bank operates under the governance of a two tier system. The 'day to day' running is overseen by a Management Committee. In turn the Management Committee is overseen by an Independent Advisory Committee. The WA DNA Bank project is overseen by the University of Western Australia's Human Research Ethics Committee and ultimately it must abide by guidelines set by the National Health and Medical Research Council of Australia.


24. If I have any questions who should I contact?
You can contact the Manager of the WA DNA Bank to answer any queries you may have about the WA DNA Bank. If, however, you have any questions about the specific study you have participated in you should contact the Study Coordinator directly.
 
Useful Links


International Society for Biological and Environmental Repositories. ISBER is the leading international forum that addresses the technical, legal, ethical, and managerial issues relevant to repositories of biological and environmental specimens.
Australasian Biospecimen Network Association. The purpose of the ABNA is to provide a forum to address technical, legal / ethical, and managerial issues relevant.

 

Centre for Genetic Origins of Health and Disease

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Last updated:
Monday, 7 December, 2015 12:52 PM

http://www.gohad.uwa.edu.au/2078114