Common Questions and Answers:

Group of people

Q: Why should I participate?

A: You can choose to participate if you would like to help researchers advance medical and cancer research, by helping support research across the continuum of cancer care, prevention and survivorship.  Even if your condition is normal or benign, all samples are helpful for cancer research. Your decision to participate could impact treatment options and cancer outcomes for future generations.

Participation is entirely voluntary and your decision to participate will have no impact on your medical treatment whatsoever. You can also choose to withdraw at any time.  Feel free to discuss this decision with your doctor, friends or family – or contact us if you would like any additional information.  

Q: What would I have to do?

A: Depending on your personal preference, you may be asked to donate the following, which you can choose to donate: 

  1. Blood donations: These are highly valuable contributions for scientific research, and can be done at the same time as other clinical blood work. Blood collected before surgery or treatment have important biomarkers that could help researchers better identify and treat cancer, but all blood samples are valuable, even if collected after treatment or surgery. Blood donations are up to 4 tbsp or 60mL (about 10% of a donation to Canadian Blood Services) and can be arranged on the morning of your surgery. Fasting samples are preferred, but are not required.
  2. Tissue samples: Are only banked if there is any tissue left over after all clinical testing is completed following a procedure - no additional tissue is ever removed and clinical testing always has precedence. As your diagnosis and treatment are the most important priority, samples are only released for research after 6 months to ensure your medical team has priority access if required.
  3. Urine or other biospecimen samples:  Depending on your condition, you may be asked to donate a urine or other type of biospecimen which are also in demand for cancer research. As with any type of biospecimen, participation is entirely voluntary but invaluable for research.  

Q: What research will my samples be used for?

A: Your samples may be used for a variety of medical research ranging from helping to determine the genetic causes of cancer, developing new treatment options geared to better treating each individual patient, identifying biomarkers that can be used to detect cancer earlier and faster, to studying the preventative measures of nutrition and exercise on cancer and other medical conditions. Research conducted on your samples will depend on ongoing research projects and requests, and we are not able to tell you specifically when and where your samples will be used, but we can promise all participants that only research that is reviewed and deemed to be ethical, legal and scientifically sound would be approved by at least two groups of experts.    

Q: Will my samples and information be kept confidential and secure?

A: Respect and privacy of our participants is one of the cornerstones of the ACRB; we treat every sample and participant as if it were a friend or family member.  Each participants and sample is assigned a number, and researchers do not receive any information which could ever identify a participant (read more here – link to ‘identified question).  All electronic and documented information is stored in accordance with Alberta Health Services Privacy and Confidentiality standards and protocols, and further adhere to the Alberta Privacy Health Information Act. This includes electronic security measures such as encryption, passwords and restricted user access through to restricted physical access and security monitoring of any paper documentation and samples.

Q: Can I participate on behalf of a relative?

A: Family members (or authorized powers of attorney) are invited to consent on behalf of a relative by 3rd Party Authorization, which allows someone to consent on behalf of a relative should the participant be unable and should the family member wish to do so.  The rights and privacy of the participant remain exactly the same.

Q: What kind of industry could use my samples?

A: Industry research includes privately-funded endeavours such as pharmaceutical or diagnostic development.  Many studies conducted by industry and academic researchers are similar and share goals such as gaining a better understanding of why certain people have different responses to cancer drugs or the development of new tests and treatments.  Samples will only be released to industry should the participant specifically consent - the decision to assist this type of research is entirely up to the participant.  

Q: How can I donate blood, tissue or other biospecimens?

A: In Calgary, blood and urine donations can be done at any CLS or hospital location, or on the morning of surgery if preferred.  In Edmonton, blood can be donated at any hospital location.  All blood donations can be done at the same time as other clinical bloodwork. Tissue donations will be automatically banked by pathology staff if there is any tissue left over following clinical evaluation.    

Q: Why might participants be re-contacted?

A: If you agree to future contact on the consent form, this gives other research groups permission to contact you to see if you might be interested in other research programs.  This does not obligate you to participate in any other research programs, it only gives permission to contact you and see if you would be interested. If you decide not to be contacted in the future, you will not be contacted by any other research groups affiliated with the ACRB. 

Q: What happens to my samples?

A: Once collected, your blood samples will be processed by spinning the blood tubes and separating the blood into derivative fractions such as serum, plasma, red blood cells and buffy coats.  Each particular blood fraction is useful to researchers interested in particular proteins or molecules.  Urine or other biospecimens are also “aliquoted” or sub-divided into small volume tubes, so that we can save as many vials of your samples as possible.  

All blood and biospecimen samples are then stored in -80oC Ultra-Cold Freezers until requested by a researcher.  Tissue samples, which are ~1-2 cm blocks of tissue collected by pathology lab staff, are placed in small barcoded vials and stored in liquid nitrogen dewars at -196oC.   (Click here for more information).   

Q: What if I change my mind?

A: If you change your mind, you can notify the ACRB that you wish to withdraw your consent and/or samples and your wishes will be carried out immediately.  Once consent is withdrawn, any biospecimens that have not been released to research will be destroyed, and all electronic demographic and health information is deleted.  You would not have to give us any reason, your wish is our command. 

Q: How will my samples be identified?

A:  All samples, beit blood or tissue or other, are identified only with a unique barcoded number generically assigned to each sample. To further ensure donor confidentiality, each participant is also assigned a unique participant number which is used on sample documentation. Thus, while relevant pathological details of the sample and de-identified participant information may be shared with researchers (such as when the sample was collected, or the diagnosis, gender and age of the participant), the only identifier ever provided to a researcher would be that generic sample number, which could never be traced back to the donor.  The privacy and respect of our participants is paramount to our operations, and is strictly protected by the provincial Health Information Act and Alberta Health Services policies. 

Other Questions

Q: How will ACRB judge the quality of research?

A: For an application to the ACRB to be considered, any and all researchers must submit a scientific description of the project, a copy of the Ethics Protocol and/or Application & Amendments, along with a copy of approval from an Ethics Review Board and CV of the Principle Investigator.  All applications will be reviewed and only accepted if researchers demonstrate clear scientific merit and guiding principles such as respect for persons and concern for welfare and justice.

Q: Will access to my information be allowed for purposes other than health-related research?

A: Absolutely not. Your information is fiercely protected by the ACRB and would never be made available to any outside party including insurance companies, employers or any other type of agency.  

Q: What happens if a researcher makes a profit from using ACRB samples?

A: If a researcher profits from discoveries made with ACRB samples, neither the ACRB or its participants will receive any monetary profits. The goal of the ACRB is to support research to benefit cancer patients, and as such does not reap any financial rewards from doing so. Should breakthroughs occur to improve cancer treatment and outcomes, that will be the best possible reward.

Q: Can researchers outside of Canada use the ACRB?

A: While the ACRB preferentially seeks to support cancer research within Alberta and Canada, applications from the rest of the world will be accepted for review. All applications, regardless of origin, are subject to the same review processes.