Policy on Collection and Use of Personal Information

The US Training Council values and respects an individual's right to keep certain Personal Information private. Likewise, the USTC-ECC values the need to collect and use Personal Information which will enable the USTC-ECC to effectively deliver products and services leading to a reduction in disability and death from heart diseases and stroke. "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 the USTC-ECC. Aggregate Information is information in summary form which does not contain data that would permit the identification of a specific individual.

A. USTC-ECC Collection of Personal Information

The USTC-ECC will collect Personal Information on an individual only if the individual provides the information to the USTC-ECC. Notwithstanding, the USTC-ECC does collect Demographic Information for fund raising purposes from various sources, such as renting Demographic Information from third parties. Also, the USTC-ECC collects Aggregate Information for research purposes.

B. USTC-ECC Use of Personal Information

1. When an individual provides Personal Information to the USTC-ECC, the USTC-ECC may use the Personal Information for its programs, research and fund raising.

2. From time to time, there is a benefit in allowing a third party to use collected Personal Information on individuals. However, unless an individual gives permission, the USTC-ECC will not allow any third party to use Personal Information collected by the USTC-ECC.

3. The USTC-ECC uses and allows third parties to use Aggregate Information for research purposes for the development or implementation of its programs, products and services.

4. The USTC-ECC 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. The USTC-ECC will disclose all information as required by law.

6. The USTC-ECC 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.

(c) The USTC-ECC owns all Personal Information provided to it by individuals. When an individual provides Medical Information to the USTC-ECC, the AHA will ensure that the individual acknowledges their assignment of the right to use the data to the USTC-ECC.

2. Scientific Research Requirements

Any research funded by the USTC-ECC 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 the USTC-ECC 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 Demographic Information (e.g., rental or exchange of donor lists with other organizations), the AHA as a minimum will use the "Opt-Out" approach. An "opt-out" is obtained when the USTC-ECC, through some correspondence, gives an individual an opportunity to decline or "opt-out" of disclosures to third parties. If the individual does not opt out, permission is deemed granted. Depending upon the nature of an activity or project, a higher standard than "opt-out" may be used, such as "opt-in" whereby an individual must affirmatively give consent before information is disclosed.

(b) For research awardees, permission is deemed granted upon submission of an application for a grant to the USTC-ECC. Therefore, the USTC-ECC may disclose Personal Information, including funding and project summary information, on research program awardees to third parties. The purposes of such disclosure include publicizing USTC-ECC awards, assessing USTC-ECC research programs/awardees relative to subsequent success in obtaining funding from other agencies, and determining contribution of awardees to print and online research grants and databases.

(c) For disclosure of Medical Information, Informed Consent is required before the USTC-ECC 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 an USTC-ECC program which collects Medical Information, the USTC-ECC will require the employer or healthcare provider to procure Informed Consent before the USTC-ECC will release Medical Information to that employer or healthcare provider.

Disclaimer     Privacy Policy    Terms and Conditions

© Copyrights 2002  - 2010 U.S. Training Council.  All rights reserved.  Return Policy