Respect Confidentiality and Privacy

I believe that the most important principle to preserve the integrity of the research project is “Respect confidentiality and privacy” Upholding individuals’ rights to confidentiality and privacy is a central tenet of every psychologist’s work. However, many privacy issues are idiosyncratic to the research population, writes Susan Folkman, PhD, in “Ethics in Research with Human Participants” (APA, 2000). For instance, researchers need to devise ways to ask whether participants are willing to talk about sensitive topics without putting them in awkward situations, say experts.

That could mean they provide a set of increasingly detailed interview questions so that participants can stop if they feel uncomfortable. And because research participants have the freedom to choose how much information about themselves they will reveal and under what circumstances, psychologists should be careful when recruiting participants for a study, says Sangeeta Panicker, PhD, director of the APA Science Directorate’s Research Ethics Office. For example, it’s inappropriate to obtain contact information of members of a support group to solicit their participation in research.

However, you could give your colleague who facilitates the group a letter to distribute that explains your research study and provides a way for individuals to contact you, if they’re interested. Other steps researchers should take include: 1) Discuss the limits of confidentiality. Give participants information about how their data will be used, what will be done with case materials, photos and audio and video recordings, and secure their consent. 2) Know federal and state law. Know the ins and outs of state and federal law that might apply to your research.

For instance, the Goals 2000: Education Act of 1994 prohibits asking children about religion, sex or family life without parental permission. Another example is that, while most states only require licensed psychologists to comply with mandatory reporting laws, some laws also require researchers to report abuse and neglect. That’s why it’s important for researchers to plan for situations in which they may learn of such reportable offenses. Generally, research psychologists can consult with a clinician or their institution’s legal department to decide the best course of action. 3) Take practical security measures.

Be sure confidential records are stored in a secure area with limited access, and consider stripping them of identifying information, if feasible. Also, be aware of situations where confidentiality could inadvertently be breached, such as having confidential conversations in a room that’s not soundproof or putting participants’ names on bills paid by accounting departments. 4) Think about data sharing before research begins. If researchers plan to share their data with others, they should note that in the consent process, specifying how they will be shared and whether data will be anonymous.

For example, researchers could have difficulty sharing sensitive data they’ve collected in a study of adults with serious mental illnesses because they failed to ask participants for permission to share the data. Or developmental data collected on videotape may be a valuable resource for sharing, but unless a researcher asked permission back then to share videotapes, it would be unethical to do so. When sharing, psychologists should use established techniques when possible to protect confidentiality, such as coding data to hide identities.

“But be aware that it may be almost impossible to entirely cloak identity, especially if your data include video or audio recordings or can be linked to larger databases,” says Merry Bullock, PhD, associate executive director in APA’s Science Directorate. 5) Understand the limits of the Internet. Since Web technology is constantly evolving, psychologists need to be technologically savvy to conduct research online and cautious when exchanging confidential information electronically. If you’re not a Internet whiz, get the help of someone who is. Otherwise, it may be possible for others to tap into data that you thought was properly protected.