The rights of adolescents as research participants in a digital age

By Diana J. Meter, Utah State University for SRA

Ecological momentary assessment (EMA) is a term used to describe the collection of data in real time while subjects remain in their natural environments. Many adolescence researchers are familiar with contemporary beginnings in social science research, such as when Reed Larson and Claudia Lampman-Petraitis signaled adolescents to record their emotional state using electronic pagers. However, with the growing ubiquity of smart phone use and ownership among adolescents, EMA has become more common and more feasible.

There is an important distinction between the paper and pencil daily diary-type studies of the past and those of today. Rather than signaling participants to record information, EMA studies can now involve continuous capture of typically private information, termed ambulatory assessment. This allows researchers to collect accurate, longitudinal data, often bypassing potential error due to social desirability bias or recall bias. However, as researchers enter the private realm of digital communication, it is important to know if adolescents understand their rights as research participants.

We obtained input from 178 adolescents, ages 17-18. These youth were involved in an ambulatory assessment research study during the last 5 years of the 10-year longitudinal project.

Do adolescents know they can drop out of a study?

The majority of participants understood that they could withdraw without negative consequences. 83% felt free to do so without their parents’ disapproval, and most participants felt that the researchers would not be disappointed if they withdrew (69%). 60% of participants understood that neither their parents nor the BlackBerry Project staff would be upset if they dropped out of the project. Participants’ awareness of their right to decline to participate was highlighted in a text message exchange between two participants:

(11:28:23am) Participant A to Participant B: Did you let the <BlackBerry Project> link up with your Facebook?
(11:28:32am) B to A: Yes 
(11:41:10am) A to B: Ehh I didn’t 
(11:41:30am) B to A: Haha that is like the whole point for thebprojec 
(11:41:34am) A to B: They already have my phone..I don’t want them on my fb too 
(11:41:41am) B to A: Haha ok

Do adolescents understand confidentiality?

Participants generally provided accurate definitions of “confidential” (90%). Almost 80% of participants understood that only the researchers could access their data, however some participants believed no one could, their parents could, or “anybody” could. Few participants correctly identified both circumstances when confidentiality would be broken (harm to self or others). Although they understood that their data were confidential, they had poor understanding of how their data would be protected; incorrect responses to this question were given by 64% of participants.

Are adolescents concerned about confidentiality?

Only a few of the participants listed concerns regarding confidentiality. One participant said, “At the beginning I was weirded out by the text messaging archiving, but I am not worried by it anymore.” 96% percent of participants reported not feeling upset or worried about the project, and 90% of respondents said that they did not adjust their behavior due to being monitored. This sentiment was evident in numerous recorded text message exchanges:

(12:52:43am) Participant to Boyfriend: I wonder what the blackberry people think of our relationship
(12:52:50am) Boyfriend: Hahahaha oh god
(12:53:18am) Participant: Haha that’s a funny thought. I don’t think about them much haha. But they see all 0.0 haha I don’t care lol 

Based on these results, we believe that adolescent participants are capable of understanding most of their research rights in a long-term, longitudinal study involving the use of technology to gather a great deal of personal information. As youth continue to live much of their lives online, we hope these results will inspire future investigators to consider using ambulatory assessment to observe communication via digital communication to understand more about how adolescents’ interactions in the digital world affect their relationships and adjustment.

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