Policy on Collection and Use of Personal Information
The There is a Light Foundation (TIAL) values and respects an individual’s right to keep certain Personal Information private. Likewise, TIAL values the need to collect and use Personal Information which will enable TIAL to effectively deliver products and services. “Personal Information” is “Demographic Information” and/or “Medical Information” which identifies a specific individual with a minimal degree of effort. Demographic Information includes name, address, city and other similar information. Medical Information includes diseases, treatments, lifestyle behaviors, family history, genotype, phenotype and other similar information. Transactional Information is data collected on an individual based on the individuals’ interactions with TIAL. Aggregate Information is information in summary form which does not contain data that would permit the identification of a specific individual.
A. TIAL Collection of Personal Information
TIAL will collect Personal Information on an individual only if the individual provides the information to TIAL. Notwithstanding, TIAL does collect Demographic Information.
B. TIAL Use of Personal Information
1. When an individual provides Personal Information to TIAL, TIAL may use the Personal Information for its programs, research and fundraising.
2. Unless an individual gives permission, TIAL will not allow any third party to use Personal Information collected by TIAL.
3. TIAL does not allow third parties to use Aggregate Information.
4. TIAL uses Transactional Information for research purposes for the development or implementation of its programs, products and services. The presumption is that since Transactional Information is highly proprietary, it will not be disclosed to third parties.
5. TIAL will disclose all information as required by law.
6. TIAL will suppress the use of an individual’s Personal Information if requested by that individual.
C. Specific Requirements
1. Administrative Requirements
(a) All Personal Information collected on individuals will be kept confidential and in a secure environment.
(b) Access to Personal Information will be restricted to only those personnel with a legitimate business purpose.
2. Scientific Research Requirements
Any research funded by TIAL that involves human subjects (e.g., information collected on individuals) must be endorsed by the sponsoring institution’s committee on clinical investigation or other appropriate body, and conform ethically to the guidelines prescribed by the National Institutes of Health, which includes obtaining informed consent from each individual.
3. Third Party Disclosure Requirements
Permission is required before TIAL discloses Personal Information to a third party. No permission is necessary for Aggregate Information, since Aggregate Information does not identify a specific individual.
(a) For disclosure of Medical Information, Informed Consent is required before TIAL discloses Medical Information to a third party. Informed Consent occurs when an individual has sufficient facts about the disclosure, comprehends those facts, and voluntarily consents to the disclosure. Where a third party such as the employer or healthcare provider of an individual requires the individual to participate in a TIAL program which collects Medical Information, TIAL will require the employer or healthcare provider to procure Informed Consent before TIAL will release Medical Information to that employer or healthcare provider.
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