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Notice to OneMatch Registrants and Consent to Participate

OneMatch Registration – Consent to Participate

Please read the following and submit your consent to participate in the OneMatch Stem Cell and Marrow Network (“OneMatch”), a program that is operated by Canadian Blood Services.

Purpose

The purpose of OneMatch Stem Cell and Marrow Network is to identify suitable donors of bone marrow or stimulated Peripheral Blood Stem Cells (collectively “Stem Cells”) for patients who require Stem Cell transplants.

Personal Information

Personal information is information that is used to identify you or that allows you to be identified; for example, your name, address, date of birth, and includes your personal health information.

Your personal health information includes any information regarding your medical profile such as your medical history and lab test results, including your blood group and Human Leukocyte Antigen (“HLA”) tissue-typing.

Collection of your Personal Information

In order for you to participate in OneMatch, you must provide personal information, including your answers to the health screening questionnaire, which will be put onto an electronic database located in Ottawa, Ontario. This electronic database is part of OneMatch. We need to collect this information about you so that we may determine your eligibility to join OneMatch 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 OneMatch 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 OneMatch’s database so that we may keep a record of individuals who have attempted to participate in OneMatch. Information about you that has been entered onto One Match’s database but which does not identify you may be used for the purpose of managing the OneMatch Stem Cell and Marrow Network 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 OneMatch, you will be required to return a buccal swab to Canadian Blood Services, where it will be used for HLA tissue-typing. A buccal swab involves brushing your inner cheek with a special swab to collect cells that can be HLA tissue-typed. The results of the HLA tissue-typing will be entered onto OneMatch’s database. We need to collect this personal health information to identify you as a potential donor of Stem Cells for patients requiring a Stem Cell transplant.

Your buccal swab may be kept indefinitely by Canadian Blood Services to perform further HLA tissue-typing in circumstances where further testing is required. Further HLA tissue-typing may be required to determine if you are a match with a specific patient or if a new HLA marker is identified as being important in the matching process and your buccal swab was not previously tested for this new HLA marker.

Use and Disclosure of Personal Information

Canadian Blood Services will use the personal information you provide us to assess your eligibility to donate and retain you as a participant in OneMatch. Transplant program health care providers and international registries who are seeking a suitable Stem Cell donor may submit requests to Canadian Blood Services to search OneMatch’s database. If you are identified as a potential donor, Canadian Blood Services will always refer to you anonymously by a unique donor number when we disclose information to the transplant program health care providers or registry. We will only disclose information to the extent that is necessary to determine your suitability as a Stem Cell donor.

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 at www.blood.ca. In the event that you are identified as a potential donor for a particular patient, but Canadian Blood Services is unable to locate you, we will share your name, date of birth, and the address and phone number that we currently have on record with the Royal Canadian Mounted Police so that they may attempt to locate you through database searches.

Use and Disclosure of Personal Information for Other Purposes

Canadian Blood Services may use your personal information for educational activities in training new health care professionals and staff. We may use your personal information to advise you regarding Canadian Blood Services programs and donor events or to send you our OneMatch newsletter. We may also use your personal information to 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.

In addition, we may use or disclose information about you that has been entered onto OneMatch’s database but which does not identify you to support approved research for the purposes of managing the OneMatch Stem Cell and Marrow Network or for statistical purposes.

Further Testing

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 that 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.

Privacy Policy/Access to Your Personal Information:

Canadian Blood Services is committed to protecting the privacy and security of the personal information of OneMatch participants. We do so by following relevant laws and best practices. We encourage you to read our Privacy Policy on our website at www.blood.ca.

Canadian Blood Services respects your right to access and request correction of your personal information. You may contact our Privacy & Access Office by telephone at 613-739-2483 or toll-free (1-888-236-6283). You may also contact us by email at ati@blood.ca (Access to Information requests and correction of information) or privacy@blood.ca (questions or concerns about the privacy of your personal information or our privacy practices).

If you have questions or concerns you may also contact your provincial Privacy and Information Commissioner or Ombudsman.

Withdrawing from OneMatch:

If you decide to withdraw from OneMatch, please contact us at Canadian Blood Services’ toll-free number, 1-888-236-6283.

If you withdraw from OneMatch Stem Cell and Marrow Network, all of your personal information collected up to the date of your withdrawal will remain in OneMatch Stem Cell and Marrow Network but no further personal information about you will be collected or added to your record. Once you have withdrawn from OneMatch your personal information will no longer be used to match you with a patient who requires a transplant. If you decide to withdraw from OneMatch, Canadian Blood Services may continue to use or disclose information derived from your personal information as part of a pool of data that does not identify you.

Consent

I have read and understood the information provided on Stem Cell donation, and consent to participate in Canadian Blood Services’ OneMatch Stem Cell and Marrow Network as a potential Stem Cell donor. I consent to the collection, use and disclosure 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 HLA tissue-typing.

I understand that by agreeing to have my personal information entered onto the OneMatch Stem Cell and Marrow Network I am not consenting to any medical procedures. If I am matched to a patient and agree to proceed with making Stem Cell donation, I will sign an “Intent to Donate” following an information session with OneMatch 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.

I have answered all questions truthfully. I understand that to make a false statement is a serious matter and could harm others.


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