Understanding Parental Perspectives and Communication of Genetic Information in Pediatric Oncology Research

A study conducted as part of the project: “Leveraging human rights to clarify the risk of genetic discrimination in pediatric oncology”

You are invited to participate in a research study examining how issues related to genetic discrimination and legal protections are understood and communicated in pediatric cancer oncology research.

Principal Investigator:
Yann Joly, Centre of Genomics and Policy, McGill University
T: 514 398-7286
yann.joly@mcgill.ca

Research Team:
Academic Associate: Dr. Lingqiao Song
T: 514 398-7286
song.lingqiao@mcgill.ca

Research Assistant: Charles Selva-Rivero
T: 438-863-2047
charles.selva-rivero@mcgill.ca

Funding:
CIHR Project: Advancing Childhood Cancer Experience, Science & Survivorship (ACCESS). ACCESS is a pan-Canadian pediatric cancers research network dedicated to advancing childhood cancer experience, science and survivorship https://www.accessforkidscancer.ca/.

Introduction
You are invited to take part in a research study. Before agreeing to participate, we ask that you carefully read the following information. This study explores how parents and guardians of children, who have received pediatric cancer care, understand and perceive the use of genetic information in research, and how these issues are communicated in research consent forms.

Purpose of the Study
The purpose of this study is to better understand:

• Parents’ knowledge and perceptions of genetic discrimination
• Their awareness of existing legal protections
• How information related to genetic data is communicated in research consent forms
• How these factors may influence decisions about research participation

The results of this study will help improve ethical communication with families and support the development of clearer and more accessible informational tools in pediatric cancer research in a Canadian context.

What Does Participation Involve?
If you agree to participate you will be asked to complete a short (10-15 minute) online survey. The survey includes a few demographic questions, a few questions about your child’s cancer, and multiple choice and open-ended questions about genetic discrimination. You will not be asked to provide any information that directly identifies you.

Compensation
Due to the anonymous nature of this survey, we are unable to offer financial compensation for your participation.

Voluntary Participation and Right to Withdraw
Participation in this study is voluntary. You may decline to participate or withdraw from the survey at any time, without giving any reason, by closing the survey browser. You are free to skip or decline to answer questions. Since the survey is anonymous, we are unable to remove your responses once the survey is completed.

The principal investigator and the Faculty of Medicine and Health Sciences Research Ethics Board (FMHS-REB) may terminate the project as a whole with no prior notice. This could happen if, for example, study instructions are not followed in a way that impacts the research, or if the project is terminated early for administrative reasons.

Risks and Benefits
There are no significant risks associated with participating in this survey. Some question relate to health and genetic information which may prompt reflections, but you may skip any question that makes you uncomfortable.

There is no direct benefit to participating in this study. However, your responses may contribute to improving communication and consent practices in pediatric cancer research.

Confidentiality
This survey is anonymous. All the information collected during the research study will remain confidential to the extent provided by law, and no identifying information including your IP address will be collected. The survey data will be securely stored on password-protected servers at McGill University.

The survey data may be hosted and shared on McGill University’s Microsoft platform, which has servers throughout Canada and might be communicated through servers outside Quebec. The survey data will only be managed and analyzed by the research team.

The results of this study will be used for academic publications and presentations. Data will be retained for 7 years post publication as required and then destroyed.

For more information regarding privacy, visit McGill's Privacy Notice

Ethics
This study has been approved by the (FMHS REB). The Research Ethics Board is a committee established to help protect the rights of research participants and is responsible for the ongoing ethics oversight of the study. If you have any questions about your rights as a research participant, and/or concerns or complaints regarding this research study, you can contact the FMHS REB at: 514-398-5410 or by e-mail: daniel.tesolin@mcgill.ca

Contact Information
For question regarding the research study please contact Charles Selva-Rivero: charles.selva-rivero@mcgill.ca, or Prof. Yann Joly: yann.joly@mcgill.ca.

Agreeing to participate in this study does not waive any of your rights or release the researchers from their responsibilities. To ensure the study is being conducted properly, authorized individuals, such as a member of the FMHS REB, the study funder or the institution may have access to the study data, but they adhere to a confidentiality policy.