Collaborating with Commercial Tissue Repositories

Mechanisms

The following are issues for protecting donors' privacy:

Choosing identifiers, coding data, protecting medical records
Protecting privacy with linked samples with many end-users within an international context
Protecting privacy when data is susceptible (theoretically) to hacking

Mechanisms for protecting data include:

de-identify as soon as possible
locked files or secure computers
a limited number of people authorized to access data
securely coded information
sound protocol for destroying the link for unlinking tissue/info
protection from interlinking databases
Coding agents or "tissue trustees" to remove identifiers at collection site and to protect linked information
independent audits of data protection mechanisms
protections of data in the event of a repository foreclosure

Privacy