Research scientists in the Kobor Lab at BC Children’s Hospital will analyze your child’s samples by measuring specific proteins, their genetic information, as well as certain marks on their DNA. By analyzing your child’s samples with your survey responses, we can better understand how the environment, such as exposure to wildfire smoke, can influence our genes.
During the entire research process, your samples and personal information will be de-identified. This means that any information that could identify you or your child, such as your name, or contact information, will not be stored alongside your child’s sample or survey responses. Instead, a unique participant number, such as Participant #123, will be assigned and that participant ID will be used to identify that sample for the rest of the study. This number will not include any personal information such as your SIN number or Personal Health Number, that could identify you or your child. This number is the only thing that will be used with any research-related information collected.
Biological Sample Storage
All of the de-identified study samples will be stored at BC Children’s Hospital & Research Institute. The building is access-limited and the samples will only be analyzed by authorized researchers of the BC Wildfire Study team.
Questionnaire Data Storage
All of the survey data will be hosted in REDCap. REDCap is a fully secure online database created for the purpose of collecting and managing clinical research data. This data will be de-identified, and any information that could identify you will be held in secure, password protected databases stored in a fire-wall-protected server at BC Children’s Hospital. This database can only be accessed by authorized staff members on the BC Wildfire Study team.
Genetic/Epigenetic Information
Genetics is the sequence of DNA, while epigenetics is how environmental factors can impact how that sequence is read without changing the sequence itself. Environmental factors, such as wildfire smoke, can impact where a small chemical group is added to DNA, and/or inflammation in the body. This modification on DNA, even without changing the exact sequence, can cause a change in how a gene is read.
Only authorized researchers of the BC Wildfire Study will collect epigenetic data from your samples. Your samples and the data will be de-identified so they will not contain you or your child’s name or personal identifying information such as their Personal Health Number. All of this data will be stored on secure servers which are fire-wall protected.
Data Processing and Storage
With your child’s samples, scientists will look at certain proteins and/or marks on genes that influence the activity of genes and how many proteins may be produced. By looking at these marks, they can test for associations between early life wildfire smoke exposure and changes to DNA or inflammation since birth. Researchers will only have access to samples and responses that have been de-identified.
After the Study is Completed
After the study is completed and the institution’s mandatory archival period of 5 years is up, any leftover samples will be destroyed. Any data collected will only be used for the purposes of better understanding the risks of wildfire exposure during pregnancy on children’s health and development. The information you provided will not be used for other purposes than what you have consented and agreed to, and your child’s sample will not be part of any biobanks.
Why collect current buccal samples?
Buccal samples, also known as a cheek swab, are a non-invasive, easily accessible, and painless method to collect DNA. DNA and certain proteins related to inflammation can change based on the environment such as exposure to wildfire smoke. Collecting current samples will allow for the measurement of those changes and the ability to make further comparisons to samples collected at birth.
Is my child’s data safe?
Your child’s samples and survey responses will be de-identified so they will not contain your child’s name or personal identifying information such as their SIN number. Their samples will be stored at BC Children’s Hospital Research Institute. The building is access-limited and the samples will only be analyzed by authorized researchers of the BC Wildfire Study team. All of the survey data will be hosted on REDCap, a fully secure online database created for the purpose of collecting and managing clinical research data. Any information that could identify you will be held in secure, password protected databases stored in a fire-wall-protected server at BC Children’s Hospital. This database can only be accessed by authorized staff members on the BC Wildfire Study team. After the study is completed and the institution’s mandatory archival period (5 years) is up, any leftover samples will be destroyed.
What do we do with your child’s sample and data?
Scientists will look at certain proteins and/or marks on genes that influence the activity of genes and how many proteins may be produced. By looking at these marks, they can test for associations between early life wildfire smoke exposure and changes to DNA or inflammation since birth. Researchers will only have access to samples and responses that have been de-identified.
What does de-identifying mean?
Any information that could identify you or your child, such as your name, will not be stored alongside your child’s sample, biological information, or survey responses. Instead, a unique participant number, such as Participant #123, will be assigned to you and stored with your data. This number will not include any personal information such as your SIN number, Personal Health Number, or initials that could identify you or your child. Only this number will be used for any research-related information collected.