The ethical aspects of data are many. Examples include defining ownership of data, obtaining consent to collect and share data, protecting the identity of human subjects and their personal identifying information, and the licensing of data. Below are several ethics cases from Responsible Conduct of Research Casebook: Data Acquisition and Management a publication from the Office of Research Integrity at the U.S. Department of Health and Human Services.
There are generally four matters of data acquisition and management that need to be addressed at the outset of a study: (1) collection, (2) storage; (3) ownership, and 4) sharing. These cases and role play present common scenarios that occur at various stages of data acquisition and management. Issues discussed include acquiring sensitive data, sharing data with colleagues, and managing data collection processes.
Case One: A researcher wants to sequence the genomes of children with cancer, eventually making them publicly available online, but encounters issues with adequate data protection and parental consent.
Case Two: After working with her advisor to develop a sophisticated database, the postdoc wants access to the database in order to submit a grant proposal but runs into trouble when seeking the advisor’s permission.
Case Three: A post-doc has a novel idea after observing a procedure during residency, but he needs access to a large amount of clinical data, including medical record numbers, so that he can eventually recruit individuals to participate in his research.
Role Play: An assistant professor places her data on the NIH’s database of genotypes and phenotypes (dbGaP) only to find that a leading researcher has published a paper using the data shared in the NIH database before the one-year embargo period was up.
From the U.S. Office of Research Integrity's RCR Casebook Stories about Researchers Worth Sharing edited by James M. DuBois
Actions that undermine data integrity include data fabrication, falsification, and misattribution. Some journals, such as the Journal of Cell Biology, have strict editorial policies regarding images and image manipulation that, if not followed, result in the rejection and/or retraction of papers.
Information from which all the following identifiers have been removed: names; geographic subdivisions smaller than a state (except for 3-digit zip codes where the population is greater than 20,000); dates other than year (except birth years that reveal an age of 90 or older, which must be aggregated so as to reveal only that the individual is age 90 or over); names of relatives and employers; telephone and fax numbers; e-mail addresses; social security numbers; medical record numbers; health plan beneficiary numbers; account numbers; certificate/license numbers; vehicle or other device serial numbers; web URLs; internet protocol (IP) addresses; finger or voice prints; photographic images; and any other unique identifying number, characteristic, or code.
A decision to get IRB approval for research will depend on the complexities of your project. Judy Savageau, MPH, prepared a useful document to inform decisions and begin thiking about pursuing IRB approval for research projects.