Discussion

1. Backgroundand Purpose Results Parent Perceptions on the Right to Request Destruction of Data after Drop-OutLisa M. Burks, B.A., Susan T. Tran, M.S., Gustavo R. Medrano, M.S., & W. Hobart Davies, Ph.D.University of Wisconsin-Milwaukee Figure 1. Research Participation if Data Kept after Study Drop-Out • Research participants’ right to withdraw from a study at any point has been well established (Schaefer, et al., 2010). • Although the right to withdraw from a study is well accepted, there has been little discussion on whether participants who choose to withdraw from a study should have the right to request destruction of their personal data collected prior to that point (otherwise known as “drop-out” data). • The following study examined parent’s perspectives on their right to request destruction of drop-out data. • Study 1: • 59% of parents reported that they believe that if their child were to drop out of the study, they should have the right to ask the research team to destroy their data. • If the consent form stated that the research team would keep the data collected: 45% reported it would not affect their decision to participate, 43% reported they would be more hesitant to participate, and 12% reported they would definitely not participate (Figure 1). • Study 2: • If the consent form stated that the research team would keep the data collected:45% reported it would not affect their decision, 46% reported that they would be more hesitant to participate, and 10% reported they would definitely not participate (Figure 2). • Among the parents who reported wanting the right to destroy their data: 60% reported requesting destruction of questionnaire data, 63% of genetic data, 62% of biological data, and 44% of environmental data (Figure 3). Methods Figure 2. Research Participation if National Children’s Study Kept Data after Drop-Out • Procedure: A community sample of parents completed an online survey. They were asked several questions regarding research participation in hypothetical studies and their right to request destruction of their data after drop-out. There were two hypothetical studies: • Study 1: Parents were asked about their child’s participation in an institutional study including questionnaires and a video-recorded public speaking task. • Study 2: Parents were asked about their participation in the National Children’s Study and they types of data they would prefer to be destroyed (questionnaire, genetic, biological, and environmental). • Participant Characteristics: • n = 432 • Ages: Parents (21 to 61 years old) and reported child (12 to 17 years old) • 66% female • 79% Caucasian Discussion • The results from this study suggest that withholding the participants’ right to destroy data after study drop-out would result in nearly 10% of potential participants declining participate. In addition, nearly half of potential participants would be hesitant to participate. • Such a decline rate in participation may result in a biased sample that would not be as reflective of the general population. • Given that of the few who choose to drop-out of a study, only half will request their data be destroyed, it would appear to be more beneficial to allow participants the right to destroy data to ensure ethical standards as well as strengthen generalizability of the study sample. Figure 3. Preferences on Types of Data Destroyed