Canadian Blood Services manages the Canadian Blood Services Stem Cell Registry.
The purpose of the Canadian Blood Services Stem Cell Registry (formerly OneMatch) is to recruit healthy, committed volunteer donors for patients in need of stem cell transplants. Registrants’ compatibility testing results will be listed on the Canadian Blood Services Stem Cell Registry for the purpose of finding potential matches with patients who require stem cell transplants.
What is Personal Information?
Personal information, which includes personal health information, is information that may be used to identify you. It includes such details as your name, address, email address, date of birth, health status and compatibility testing.
Collection of Your Personal Information
In order for you to participate in Canadian Blood Services Stem Cell Registry, we will collect personal information about you from your buccal swab as well as your answers to the health screening questionnaire. This information will be put into an electronic database which forms part of Canadian Blood Services Stem Cell Registry, for which the servers are located in Ottawa, Ontario. Because your personal information will be held in Ontario, it may be subject to the privacy laws of Ontario, as well as any privacy laws in your own province. We may also review our records to determine if you have ever donated or attempted to donate blood, or, if you are female and have delivered a baby, if you have donated your baby’s umbilical cord blood through Canadian Blood Services national public cord blood bank. We need to collect this information about you so that we may determine your eligibility to join Canadian Blood Services Stem Cell Registry and to contact you about receiving a buccal swab kit so that you may proceed with your enrolment.
If it is determined that you are not eligible to participate in Canadian Blood Services Stem Cell Registry, or you do not provide a buccal swab, we will not use your personal information to identify you as a potential donor for a patient requiring a transplant. However, the personal information that we have collected about you up to that time will remain on Canadian Blood Services Stem Cell Registry’s database so that we may keep a record of individuals who have attempted to participate in the program. Information about you that has been entered into Canadian Blood Services Stem Cell Registry’s database, but which does not identify you, may be used for the purpose of managing the Canadian Blood Services Stem Cell Registry, or for statistical purposes.
Collection and Testing of Buccal Swabs
If we determine that you are eligible and you wish to proceed with your enrolment with Canadian Blood Services Stem Cell Registry, you will be required to return a buccal swab to Canadian Blood Services where it will be used for compatibility testing. A buccal swab involves brushing your inner cheek with a special swab to collect cells that can be tested for compatibility. The results of the compatibility testing will be entered into Canadian Blood Services Stem Cell Registry’s database. We need to collect this personal health information to identify you as a potential donor of stem cells for a patient requiring a stem cell transplant.
Your buccal swab may be kept indefinitely by Canadian Blood Services to perform further compatibility testing in circumstances where further testing is required. Further compatibility testing may be required to determine if you are a match with a specific patient or if a new compatibility test is identified as being important in the matching process and your buccal swab was not previously tested for this new compatibility test. If at any time Canadian Blood Services Stem Cell Registry determines that you are not eligible to participate in the program for any reason, your buccal swab will be discarded.
How Do We Use Your Personal Information?
We may use your personal information to:
Assess your eligibility to donate and retain you as a participant in Canadian Blood Services Stem Cell Registry;
Protect the safety of blood, blood products and stem cells in the event your responses to the health screening questionnaire indicate a potential risk;
Make our services better and more efficient;
Support our education and training activities;
Comply with legal and regulatory requirements;
Fulfill any other purposes prescribed by law;
Advise you regarding Canadian Blood Services’ programs and donor events;
Send you materials such as e-newsletters and e-magazines about Canadian Blood Services with the option to unsubscribe if you do not wish to receive them;
Contact you about our fundraising activities. If you wish to remove your name from our fundraising contact list, please call 1 888 2 DONATE (1-888-236-6283) and ask for our National Fundraising Office.
Your Personal Information May Be Shared With
Canadian transplant centres and international registries. We will only refer to you by using a unique donor number when we disclose information to the transplant program health care providers or registries;
The Royal Canadian Mounted Police (RCMP) so they may attempt to locate you through database searches in the event you are identified as a potential donor for a particular patient and Canadian Blood Services has failed to locate you. If the RCMP is unable to locate you, Canadian Blood Services Stem Cell Registry will no longer use your personal information to identify you as a potential donor for a patient requiring a stem cell transplant and your buccal swab will be discarded;
Accreditation or regulatory bodies provided they agree to keep it confidential; and
Others, as authorized or required by law.
It is important that Canadian Blood Services be able to contact you in the case where you are identified as a potential Stem Cell donor for a particular patient. If you change your contact information (i.e. your address or phone number) please let Canadian Blood Services know by following our procedure as outlined in the Change Your Address link on our website.
If you are identified as a potential stem cell donor you will be asked to undergo further laboratory testing to determine if you are a suitable donor for a particular patient. This may include testing for blood grouping as well as for hepatitis, syphilis, Acquired Immune Deficiency Syndrome (AIDS), Human T-Lymphotropic Virus (HTLV), West Nile Virus (WNV), and other factors to make sure your donation is as safe as possible. At that time, we will contact you to make arrangements for the collection of blood samples for this additional testing.
Withdrawing From Canadian Blood Services Stem Cell Registry
You may withdraw your consent to participate in Canadian Blood Services Stem Cell Registry at any time by contacting Canadian Blood Services at 1 888 2 DONATE (1-888-236-6283). All personal information collected up to the date of your withdrawal will remain in the Canadian Blood Services Stem Cell Registry database, but no further personal information about you will be collected or added to your record. If you withdraw, your personal information will no longer be used to match you with a patient who requires a transplant and your buccal swab will be discarded.
How to Contact Us
You may contact our Privacy and Access to Information Office for more information about our privacy and access practices, or to request access to or correction of your personal information as follows:
Canadian Blood Services
Privacy and Access to Information Office
1800 Alta Vista Drive
Ottawa, ON K1G 4J5
If you feel your concerns have not been addressed by Canadian Blood Services you have the right to contact your provincial Privacy Commissioner or Ombudsman.
I have read and understood the information provided on stem cell donation and consent to participate in Canadian Blood Services Stem Cell Registry as a potential stem cell donor. I consent to the collection, use, disclosure and retention of my personal information, including my personal health information, for the purposes outlined above. If eligible, I agree to provide a buccal swab to Canadian Blood Services for compatibility testing.
I understand that by agreeing to have my personal information entered into the Canadian Blood Services Stem Cell Registry I am not consenting to any medical procedures. If I am matched to a patient and agree to proceed with making a stem cell donation, I will sign an “Intent to Donate” form following an information session with Canadian Blood Services Stem Cell Registry staff. Before proceeding with the stem cell donation, I understand that I will have to undergo a comprehensive medical examination and the collection centre medical team will discuss the required consent for medical procedures, including stem cell donation, with me.