LibGuides: Ethics Resources for IPRO Teams: Privacy/Confidentiality

Confidentiality

In IPROs working with companies, you may be asked to sign a non-disclosure or a confidentiality agreement. These types of agreements are a legal contract between you and the company you are working with that outlines confidential material, knowledge, or information that can be discussed between you and members of the company, but is not to be disclosed to outside third parties. These kinds of agreements are meant to protect any type of confidential and proprietary information or trade secrets.

Exelon Non-Disclosure Form
This is an example of a non-disclosure form that the electric company Exelon uses when working with outside vendors.

Handling Personal Data

Informed Consent Tips
The U.S. Office for Protection from Research Risks has put together a sheet describing best practices for obtaining the informed consent of individuals participating in research. During the informed consent process, individuals learn about the purpose of research, what they will be asked to do, and how any personal information will be handled, stored, and used by researchers.

When individuals agree to participate in a survey, research project or other activity that asks them to provide personal data, the usual assumption is that the information they provide will only be used for that that particular study, and that their information will not be shared with others, unless they are otherwise notified. Many legal protections and guidelines exist concerning the proper handling, use, protection, and disposal of personal data.

HIPPA Privacy Rule for Researchers
This article discusses the HIPPA Act of 1996 which protects the privacy of individuals' medical records, and outlines how this effects how researchers handle medical information.

Privacy and Marketing

Direct Marketing Association’s Online Marketing Guidelines
Guidelines developed by the Direct Marketing Association covering how marketers should respect the privacy of consumers.

Many kinds of surveys and questionnaires administered for marketing research purposes may not fall under institutional or federal guidelines protecting human research subjects. However, the Direct Marketing Association has put together a number of guidelines of how personal information should be handled in these circumstances.

The DMA Ethical Guidelines on Collection, Use and Transfer of Health-Related Data
Guidelines written by the Direct Marketing Association on the proper handling of health- related data of consumers.
The Code of of Marketing Research Standards
Guidelines developed by the Marketing Research Association about how to responsibly conduct research in this field. Available through the IIT IPRO website.

Privacy in Cyberspace

Is your team building a smartphone ap, designing a web site, or intersted in exploring the ethics of privacy online? Check out this guide for more information.

Privacy and Social Media Research

The British Psychology Society has put out a rather good set of guidelines highlighting some of the areas researchers should pay attention to when embarking on research that involves using personal data gathered through social media outlets.

Example Case Studies

Presented below are a handful of case studies that explore issues of handling personal data and confidentiality.

Clinical Trial Data Headaches
You have developed a new device for the treatment of congestive heart failure and are working with a company you helped to create to complete the clinical trials of this device. Several of the other investigators at different institutions are collaborating in testing the device, and many of them want to be able to keep primary patient data from the clinical trial in a database located on their site. The CEO of your company is worried that the other investigators might not take proper care of
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Developed by Standford University, BioDesign Center.
Oil Spill
Peter has worked with Bigness Oil Company's local affiliate for several years, and has established a strong, trusting relationship with Jesse, manager of the local facility. Jess has recently recommended Peter be retained as the corporate consulting engineer for the company, which would be an impressive addition to his resume. During a casual conversation, Jesse mentions a leak that occurred at the company in the 1950's where 10,000 gallons of a petrochemical leaked into the local environment, though at the time no damage was found, and no mention of this leak was made to the press. When Peter mentions that state law requires him to report all spills, Jesse reminds him that no harm has been done and reminds him that he can't have a consulting engineer who does not value client loyalty and respect client confidentiality.
Brother Where Are Thou?
Citywatcher.com, a company that provides security surveillance equipment, has sought to protect a vault containing sensitive data by implanting a radio frequency identification device (RFID) in the arms of two of their employees. RFIDs are now widely used in things like library books, credit cards, and other items, but critics worry about privacy issues connected with implanting them in humans.