Genetic Alliance Privacy Policy

Genetic Alliance is committed to protecting your privacy. Below is a summary of our privacy procedures, including issues of confidentiality.

Your privacy is important to us. To better protect your privacy, we provide this notice explaining our online information practices and choices you can make about the way your information is collected and used. To make this notice easy to locate, we make it available as a link on our home page, and at every point where personally identifiable information may be requested.

Disclosure

When you contact us using embedded email links, your email address, name and other information included in the email are forwarded through the site to the appropriate persons within Genetic Alliance to respond. Hard copies of these letters may be kept at the Alliance.

Computer Tracking of Identifiable Information

Our servers are not set up to track, collect or distribute personal information (e.g. names and addresses) about our visitors. However, we can tell which Internet service provider our visitors use. This information is used for internal purposes by Alliance staff only.

We compile statistics that show the daily number of visitors to our site, the daily requests for particular files on the site, the countries that requests are coming from, and browser and operating systems used. This information is used internally to help us improve the content and scope of the site. The statistics contain no personal information and cannot be used to gather such information.

Other Sites

Genetic Alliance links to other sites that may be of interest to those who use our site. The Alliance is not responsible for the privacy practices or the content of such Web sites.

Confidentiality

Genetic Alliance is firmly committed to the principle of confidentiality of information for its activities and programs. Alliance staff members, its volunteers, and paid consultants have an ethical and legal obligation to respect the privacy of all agency and participant information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities.

Procedures for Maintaining Confidentiality

  1. All individuals involved with Alliance programs or data, whether in a staff, volunteer, or consultant capacity, shall sign an assurance of confidentiality, which will be kept on file at the Genetic Alliance office.
  2. All individuals working with the Alliance in any capacity shall keep completely confidential the names of individuals contained in any data files, including these individuals' affiliation or genetic condition. All information or opinions, whether the information is learned directly or incidentally, shall also be kept confidential. Individuals shall exercise reasonable caution to prevent access by others to agency, member organizations, or individual consumer information in their possession.
  3. Any data containing personal identifiers (names, etc.) shall be kept in a secure area when not being used. Reasonable caution shall be exercised in limiting access to information to only those persons who are working with the Alliance, on a project or as a part of other organizational activities, and who have been instructed in the applicable confidentiality requirements for the organization.
  4. When records or forms with identifiers are to be transmitted to another party, such as for data entry, any outside parties shall be informed of these procedures and shall sign an assurance of confidentiality form.
  5. At the end of the period of performance, project, or organizational activity, the Alliance Executive Director, as required, will determine how documents/information will be disposed of.
  6. The Alliance has review rights for any publication that may result from surveys, data analysis, or other activities performed using Alliance information. "Publication" means a written article or paper that will be presented at a meeting, published in a journal, newsletter, or other widely circulated periodical.