Data Management Services

Data sharing is essential to the advancement of research and in some cases requirements from funders and publishers.

For further reading of about the importance of data sharing see "Sharing of Data Leads to Progress on Alzheimer’s"

In this context or in the drafting of data management plans, common questions are (1) what are the legal rights in data; (2) who has these rights; and (3) how does one with these rights use them to share data in a way that permits or encourages productive downstream uses? This perspective explains how to work through the general intellectual property and contractual issues for all research data.

Carroll MW (2015) Sharing Research Data and Intellectual Property Law: A Primer. PLoS Biol 13(8): e1002235.

Disclosure is the unauthorized release of information that may identify an individual research participant or organization 

• Direct identifiers or Personally Identifiable Information (PII), such as name, address, social security number, and phone number.
• Indirect identifiers, such as zip code, birthdate, education, and race/ethnicity, that could be used in combination to uniquely identify an individual.
• Information in a dataset that can be linked with outside information, from sources such as social media, administrative data, or other public datasets, that results in identification of an individual.

Legally protected data have restrictions placed on them by law 

• Family Education Rights and Privacy Act (FERPA) protected educational records data, such as grades
• Health Insurance Portability and Accountability Act (HIPAA) protected medical or healthcare data

Sensitive data refers to any information that may cause harm, legal jeopardy, or reputational damage to the subject if disclosed. Such data may or may not be legally protected. Examples include:

• Criminal of illegal behaviors, such as drug use
• Mental health information
• Sexual behaviors
• Information about minors or other vulnerable populations

Before sharing human subjects data publicly  both direct identifiers AND indirect identifiers that may pose a disclosure risk must be removed.