Ethics Standards and Practices

Genizon values the rights of participants

Genizon recognizes the pre-eminence of human dignity in all of its research projects. First among Genizon's list of corporate values is respect for research program participants and their rights. In this regard, Genizon ensures that:

• Subjects voluntarily confirm their willingness to participate in a particular program after having been informed of all aspects of the program that are relevant to the subject’s decision to participate. Consent can be withdrawn at any time.
• Choices regarding use of their DNA are presented to participants and measures are taken to ensure that their wishes are respected.
• Potential risks and negative consequences associated with participation in a study are disclosed in the Informed Consent Form and measures and procedures are in place to keep these risks and consequences to a minimum.
• The right to privacy of individuals is respected and their confidentiality is protected.
• Through the creation of a Trust Fund, Genizon will share 3% of its net profits with the population of Quebec in recognition of its contribution to Genizon's research activities.

Research Ethics Standards and Practices

Genizon has adopted rigorous standards in terms of ethical conduct and scientific integrity. All research protocols and informed consent forms used by Genizon are reviewed by independent Ethics Committees (institutional, provincial or private) for approval prior to implementation. With the help of external consultants in ethics, these documents and Genizon’s related policies and procedures are regularly updated according to new national and international guidelines and recommendations that are relevant to genetic research.

Genizon has a large proportion of its clinical staff dedicated to ethics, clinical research compliance, and quality assurance. It is committed to ensuring that the rights of participants are respected and that all of its research activities are conducted in compliance with applicable guidelines and regulations and according to Good Clinical and Laboratory Practices.

Genizon has also created an Ethics Advisory Committee to address the novel ethical, legal and social issues raised by human genetic research and to act in an advisory capacity to Genizon on these matters. A leading expert in bioethics chairs this committee and its members have a strong and common interest in the ethics of human genetic research.

Confidentiality and Protection of Personal Information and DNA Samples

Genizon has instituted strict measures to protect the confidentiality of all research information by limiting its access to authorized personnel only. When enrolled, participants are assigned a code number that is used to link them to their research information and DNA samples so that their identify is protected. Personal information such as the name, address and telephone number of the participant is never communicated to Genizon’s internal research scientists or to external collaborators who only have access to coded information. The participant’s information and DNA samples are protected against unauthorized access through laboratory facilities, equipment, and databases that are controlled by magnetic cards, informatics firewalls, alarm systems, and other material and technical measures. They are also protected against unauthorized use by strict internal procedures and policies.

For more information on Genizon’s Research Ethics Standards and Practices, please contact us at: infoparticipants@genizon.com.