Study Description:
Advances in genetic research have led to the development of tests that can predict individual risk of developing various diseases or individual response to certain medications. Thus, genetic knowledge is progressively contributing to better health care decision-making. However, genetic information can be used outside the context of health care and research. Genetic discrimination (hereafter "GD") defines a person who is treated differently on the basis of his/her/their genetic information. Victims of GD may experience diminished social and professional opportunities and may face psychological distress. In Canada and abroad, reports of GD are primarily in the context of insurance and, to a lesser extent, employment. Reports on GD or the use of genetic data to enable other types of discrimination have also emerged in new contexts, including interpersonal relationships, education, home ownership, adoption, immigration, and crime prevention. With this increased focus on GD, there is a risk that individuals will be deterred from accessing the benefits of genetic testing for fear of discrimination.
We created the Genetic Discrimination Observatory (GDO), a network of international experts and collaborators from over 25 countries dedicated to researching and preventing genetic discrimination. We have also designed a GDO website that functions as a communication platform with the public and researchers to provide tools, information, scientific publications, conference announcements, and news related to GD.
Given the research mission of the GDO, we seek to better understand GD-related events and compile data to advance the policy debate on this issue. Through the "Share Your Story" webpage, the GDO offers online visitors the opportunity to anonymously share GD-related events they may have experienced. Any information provided through the secure study submission page is anonymous and will only be made public as generalized research results
Sharing Your Genetic Discrimination Experience
As a GDO visitor, you may have experienced and dealt with GD yourself and would like to share your experiences in confidence with our research team. We have designed an anonymous submission process that minimizes the privacy and confidentiality risks associated with your personal information. As a research participant, the anonymous data you submit will be held confidentially on a restricted access server only used by the researchers of the Centre of Genomics and Policy to review your information. Your information will help to better understand and characterize genetic discrimination, and compile data to advance the policy debate on this issue.
Privacy
The information you provide us is anonymous1. Researchers who review and analyze your information will not be able to re-identify you. No personally identifiable information will be published. All data will be stored on a secure server with restricted access hosted by McGill University.
1 Also in accordance with the standards established by the HIPAA Privacy Rule (United States), section 164.514(a)(b)(c); and the Federal Law for the Protection of Personal Data in the Possession of Private Bodies (Mexico), articles 6-8, 10.
Benefits of the Research
There are no direct benefits to you as a participant in this study. However, your participation can contribute to statistical data on GD and/or advance the policy debate on genetic discrimination. The overall results of this study will be published in open access journals. They may also be made available to research participants on the GDO website.
Risks of the Research
Because there may be a risk that disclosure of your personal information by a third party could cause you harm, we have designed a completely anonymous submission and data collection process that minimizes the risk to your privacy and confidentiality. As a result, we are confident that you will be able to share your GD experience with us without running the risk of physical, psychological or social damage consequently.
Freedom of Participation
Your participation in this research is entirely voluntary. You are free to withdraw the information you have provided at any time using the contact information provided in this consent form. In addition, your withdrawal from the study will have no adverse consequences. If you withdraw from the study, the information we collected prior to your withdrawal will be destroyed at your request. If you withdraw from the study after your data has been analyzed, we will destroy the information you submitted, but will retain the overall results of the analysis of your data.
If you decide to withdraw from the study, you can communicate your decision with our study coordinator using the contact information below.
Whom to Contact
If you would like more information about this study, or if you have any questions about your rights as a research participant, please contact the study coordinator.
Compensation
Participants will not receive any financial compensation.
Legal Disclaimer
The researchers of the GDO do not provide legal or professional advice. For any legal or health issues resulting from the above experience, we recommend that you consult the appropriate professional.
