Information and Consent Form

Study title: Opportunities and challenges in epigenetics: an international survey of researchers

Investigator:
Yann Joly, Centre of Genomics and Policy, McGill University.
 
Study Coordinator: Charles Dupras, Centre of Genomics and Policy, McGill University.
 
Funding: Canadian Institutes of Health Research
 
Introduction
As a researcher in the field of epigenetics, you are invited to participate in a project entitled: “Opportunities and challenges in epigenetics: an international survey of researchers”.
 
Why is this research being done?
Epigenetics is a relatively novel field of study. This survey aims to ask researchers about their opinions and experiences regarding opportunities, challenges and areas of concern in the conduct and application of epigenetic research.
 
What is the purpose of this study?
This study is being conducted by researchers at the Centre of Genomics and Policy (CGP) at McGill University. We are hoping to hear from nearly 300 experts about their experiences, opinions and concerns. This will help us to identify areas of agreement and disagreement among scientists and the most pressing issues related to the conduct of epigenetic research and knowledge translation. The results of the study will also help us provide researchers, health care professionals and policy makers with possible avenues to maximize the positive outcomes of research in epigenetics and to refine the research agenda of studies of ethical, legal and social implications of epigenetics.
 
If I take part in this study, what do I need to do?
If you decide to participate in this study, you will be asked to complete this survey. It contains 20 questions, many of which are not mandatory. It will take approximately 10 minutes of your time. The questions will be about: 
  • Your experience of challenges and ethical issues in the conduct of epigenetic research (e.g. accessing epigenetic data contained in existing databases)
  • Your experience of challenges and ethical issues the application of findings (e.g. patenting)
  • Your opinion about potential non-medical use of epigenetics (e.g. insurance, direct-to-consumer testing)
  • Your expertise and experience in epigenetics
  • Demographics
You will have the opportunity to save your responses and return to the survey later. You can go back to a previous question and change your response. If you close the browser during the survey, your responses will not be saved.
 
Your participation is voluntary.
It is your decision whether to take part in this study or not.
Can I withdraw from the study?
You are free to withdraw from the study at any time and for any reason. If you withdraw after you submit your survey results, you may contact the study coordinator (phone number and email provided at the end of this on this form) and ask that your data be destroyed. However, if you decide to withdraw after the final results are in press or published, we will be unable to remove your supplied data from the study.
 
What are the benefits and/or risks?
There are no risks to participating in this survey. There are no direct benefits to participating.  However, we expect that the results of our study will contribute to providing guidance to improve the positive outcomes of research in epigenetics.
 
Will I be paid to participate?
You will not receive any form of compensation for taking part in this survey.
 
Will information be kept confidential/private?
All data collected from this survey will be kept confidential by the researchers and will be protected by the SurveyMonkey privacy policy. The survey data downloaded from SurveyMonkey platform by the research team will be kept for 7 years and securely stored in a password-protected server at the Centre of Genomics and Policy, McGill University (Montreal), and only the researchers involved in this study will have access to the data. Participants will not be personally identified in published papers or reports. If you voluntarily choose to provide us with your name and email address so that the research team can contact you for a follow-up study, this identifying information will be accessible only to members of the research team and it will not be linked to your responses.
 
What happens to the information collected?
Once this research project is complete, an article may be submitted to a scientific journal for publication. If you ask us, we will send you copies of any final report or publications.
 
Who do I contact if I have questions?
If you have any questions about this research project, you can contact the study coordinator, Charles Dupras at charles.dupras2@mcgill.ca or 1 514 398 8244

Question Title

Confirmation

 
9% of survey complete.

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