Policy on Collection and Use of Personal Information
The Maryam Parman Foundation for Injured Children (MPFIC) values and respects an individual’s right to keep certain Personal Information private. Likewise, MPFIC values the need to collect and use Personal Information which will enable MPFIC 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 MPFIC. Aggregate Information is information in summary form which does not contain data that would permit the identification of a specific individual.
A. MPFIC Collection of Personal Information
MPFIC will collect Personal Information on an individual only if the individual provides the information to MPFIC. Notwithstanding, MPFIC does collect Demographic Information.
B. MPFIC Use of Personal Information
1. When an individual provides Personal Information to MPFIC, MPFIC may use the Personal Information for its programs, research and fundraising.
2. Unless an individual gives permission, MPFIC will not allow any third party to use Personal Information collected by MPFIC.
3. MPFIC does not allow third parties to use Aggregate Information.
4. MPFIC 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. MPFIC will disclose all information as required by law.
6. MPFIC 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 MPFIC 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 MPFIC 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 MPFIC 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 MPFIC program which collects Medical Information, MPFIC will require the employer or healthcare provider to procure Informed Consent before MPFIC will release Medical Information to that employer or healthcare provider.