Privacy Policy & Code of Conduct

Privacy Policy & User Code of Conduct

The Audiological and Genetic Database (AudGenDB) project is funded by the National Institutes of Health (NIH), and therefore, is obligated to abide by NIH rules on the use of clinical and genomic data. Policies for data use for the AudGenDB project have been established and modeled after those by other NIH genome projects that include clinical and genomic data.

The following is the Code of Conduct that each research investigator agrees to abide by as an Approved User of data received through AudGenDB.  Failure to abide by any term within this Code of Conduct may result in revocation of approved access to any or all datasets obtained through AudGenDB.

The elements of the NIH Code of Conduct for Genomic Data Use include:

  1. Investigator(s) will use requested datasets solely in connection with the research project described in the approved Data Use Agreement;
  2. Investigator(s) will make no attempt to identify or contact individual participants from whom these data were collected without appropriate approvals from the relevant IRBs;
  3. Investigator(s) will not distribute these data to any entity or individual beyond those specified in the approved Data Use Agreement;
  4. Investigator(s) will adhere to computer security practices that ensure that only authorized individuals can gain access to data files;
  5. Investigator(s) acknowledge the Intellectual Property Policies as specified in the Data Use Agreement; and,
  6. Investigator(s) will report any inadvertent data release in accordance with the terms in the Data Use Agreement, breach of data security, or other data management incidents contrary to the terms of data access.

Privacy Policy

Patient privacy is a paramount consideration in all aspects of the AudGenDB Project.  At every step, we have ensured that privacy is protected and that stringent data security procedures are in place to ensure that patient data is not revealed, either by oversight or by malicious activity.  As with other NIH projects, we are bound by applicable Federal regulations, as delineated in NIH Notice Number: NOT-OD-07-088:

Applicable Federal regulations may include HHS human subjects regulations (45 CFR Part 46), FDA human subjects regulations (21 CFR Parts 50 and 56), and the Health Insurance Portability and Accountability Act Privacy Rule (45 CFR Part 160 and Part 164, Subparts A and E).

The identities of data subjects cannot be readily ascertained or otherwise associated with the data by the repository staff or secondary data users (Common Rule); and the following data elements have been removed (HIPAA Privacy Rule).

  1. Names.
  2. All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000.
  3. All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, date of death; and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older.
  4. Telephone numbers.
  5. Facsimile numbers.
  6. Electronic mail addresses.
  7. Social security numbers.
  8. Medical record numbers.
  9. Health plan beneficiary numbers.
  10. Account numbers.
  11. Certificate/license numbers.
  12. Vehicle identifiers and serial numbers, including license plate numbers.
  13. Device identifiers and serial numbers.
  14. Web universal resource locators (URLs).
  15. Internet protocol (IP) addresses numbers.
  16. Biometric identifiers, including fingerprints and voiceprints.
  17. Full-face photographic images and any comparable images.
  18. Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re-identification

Finally, in addition to these Federal policies, the users of this website are obligated to abide by institutional policies of the Children’s Hospital of Philadelphia covering web usage, including the Terms of Use and Website Privacy Policies.