NOTE: Since its discovery in 1995, this type of hereditary cancer has changed from one type of cancer, caused by mutations in only one gene to several types of cancer, caused by mutations in any of many different genes. As a result, all labels used to describe this syndrome, such as ''breast cancer gene'', ''BRCA'', ''hereditary breast and ovarian cancer'' and ''HBOC'' tell only part of the story, leaving out well over half of those who are affected. To better serve our patient group, we are in the process of changing our name and updating all resources to reflect the fully inclusive and future forward RISKY GENES™ brand. We ask for your patience during this process.
Summary of Principles
An organization is responsible for personal information under its control and shall designate an individual or individuals who are accountable for the organization's compliance with the following principles.
2. Identifying Purposes
The purposes for which personal information is collected shall be identified by the organization at or before the time the information is collected.
The knowledge and consent of the individual are required for the collection, use, or disclosure of personal information, except where inappropriate.
4. Limiting Collection
The collection of personal information shall be limited to that which is necessary for the purposes identified by the organization. Information shall be collected by fair and lawful means.
5. Limiting Use, Disclosure, and Retention
Personal information shall not be used or disclosed for purposes other than those for which it was collected, except with the consent of the individual or as required by law. Personal information shall be retained only as long as necessary for the fulfilment of those purposes.
Personal information shall be as accurate, complete, and up-to-date as is necessary for the purposes for which it is to be used.
Personal information shall be protected by security safeguards appropriate to the sensitivity of the information.
An organization shall make readily available to individuals specific information about its policies and practices relating to the management of personal information.
9. Individual Access Upon Request
An individual shall be informed of the existence, use, and disclosure of his or her personal information and shall be given access to that information. An individual shall be able to challenge the accuracy and completeness of the information and have it amended as appropriate.
10. Challenging Compliance
An individual shall be able to address a challenge concerning compliance with the above principles to the designated individual or individuals accountable for the organization's compliance.
HBOC Society, #114, 11728 Kingsway Avenue Edmonton, AB T5G 0X5 E.email@example.com
For copies of the CSA Model Code for the Protection of Personal Information contact:
Canadian Standards Association, 178 Rexdale Blvd. Etobicoke, Ontario M9W 1R3