Penn State Data Management Plan Tutorial

3.4 Summary

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While funding agencies created the DMP requirement to encourage sharing of data, there are data produced on funded research projects that are sensitive and need to be restricted for access and use. These kinds of data tend to include personally identifying information (PII), such as might be collected as the result of demographic surveys or those found in health records. Often such data are protected under federal law, such as the Health Information Privacy and Accountability Act (HIPAA).

If the data resulting from your project are likely to have confidentiality or ethics issues (such as human subject research engenders), then these should be noted in your DMP. Be sure to consult Penn State's Human Subject Research (IRB) site, as well as RA22: HIPAA and Research at Penn State University. If applicable, review RA 23: HIPAA and the Milton S. Hershey Medical Center and Penn State College of Medicine.

There can be intellectual property rights issues as well, particularly with patent-pending research, that can prevent the sharing of data for a period of time. In such situations, an embargo may need to be implemented for your data, and you should state such in your DMP, specifying when the embargo will be lifted.

A DMP does not need to go into detail regarding confidential data and intellectual property rights, beyond stating what kind of restrictions on access are likely. For guidance during a project, Penn State provides faculty, students, and staff with research guidelines and policies that can be helpful to draw on.

Finally, if possible, the DMP should state whose role it will be to monitor embargoes, consent forms, non-disclosure/confidentiality agreements, and so on.

Check Your Understanding

Which of the following types of data would be considered confidential?

(a) Social Security numbers
(b) Student grades
(c) Personal medical information
(d) All of the above

test-bulbClick for answer.

ANSWER: (d) All of the above. Confidential information is often information that might lead to the identification of the human subject or to more information about the human subject who participated in a study. Special measures, such as redaction or anonymization, are typically taken to prevent breaches of confidence.