April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: Reporting Back Results Is Only the Beginning: Exploring Ownership of Private Information in Environmental Health Sciences Research
While once viewed as an unusual novelty, reporting back research results to participants who provide biological samples has become increasingly common in environmental health science (EHS) research. And the value of report-back has been demonstrated in numerous ways in the literature. But as the novelty of the practice has faded in some circles, research on report-back continues to be preoccupied with changes in knowledge and trust without addressing important questions regarding the scientist-participant relationship and co-ownership of research data.
We view this research gap as an opportunity to bridge the disparate fields of the EHS and health communication with reporting back research results as a valuable context. We argue that it is time to focus less on what is being reported back toward how the relationship between scientists and participants develops and thrives through the communication of private information. Communication scholars are poised to contribute to this scholarship in innovative ways.
Our research provides one exploratory inquiry into such innovation at the intersection of communication privacy management theory and existing practices in EHS research. In traditional scientific research, biological samples and their characteristics (i.e., private information) are provided by the participant to the researcher in a one-way transaction. Then the participant’s role ends. Reporting back research results transforms this relationship. Once nameless and faceless to each other, the participant now can raise challenging questions while the scientist must navigate the difficulties of science communication.
This transformation introduces new questions about who owns the data, what the boundaries ownership might be, and how the two parties resolve perceived conflicts over the use of these biological data. Our research questions include:
1. How did the idea of ownership of private information emerge in participants’ descriptions of their experiences?
2. What explicit and implicit privacy rules did participants construct around their data?
3. And how did participants describe the ideas of co-ownership and privacy rule coordination related to satisfaction with the study?
Our data come from an evaluation of report-back practices in the GenX Exposure Study, which collected samples of blood, urine, and tap water from residents of the Cape Fear River valley in North Carolina. From survey questionnaires of participants (N = 345), we analyze both quantitative and qualitative data.
The results of our ongoing analysis offer a number of insights. First, responses to open-ended questions indicate that some participants view ownership in multifaceted ways; they not only acknowledge co-ownership of their own individual data, but also co-ownership of the overall research effort at both the individual and community levels. Second, a large number of participants constructed explicit privacy rules around the timeliness of receiving results; a few even viewed the lack of timeliness as a serious failure of privacy rule coordination on the part of the scientists. Finally, quite a few participants indicated a necessary linkage in privacy rules to include their health care provider and expressed dissatisfaction with the lack of clinical guidance provided in report-back. Further findings and recommendations for future research will be discussed.
We view this research gap as an opportunity to bridge the disparate fields of the EHS and health communication with reporting back research results as a valuable context. We argue that it is time to focus less on what is being reported back toward how the relationship between scientists and participants develops and thrives through the communication of private information. Communication scholars are poised to contribute to this scholarship in innovative ways.
Our research provides one exploratory inquiry into such innovation at the intersection of communication privacy management theory and existing practices in EHS research. In traditional scientific research, biological samples and their characteristics (i.e., private information) are provided by the participant to the researcher in a one-way transaction. Then the participant’s role ends. Reporting back research results transforms this relationship. Once nameless and faceless to each other, the participant now can raise challenging questions while the scientist must navigate the difficulties of science communication.
This transformation introduces new questions about who owns the data, what the boundaries ownership might be, and how the two parties resolve perceived conflicts over the use of these biological data. Our research questions include:
1. How did the idea of ownership of private information emerge in participants’ descriptions of their experiences?
2. What explicit and implicit privacy rules did participants construct around their data?
3. And how did participants describe the ideas of co-ownership and privacy rule coordination related to satisfaction with the study?
Our data come from an evaluation of report-back practices in the GenX Exposure Study, which collected samples of blood, urine, and tap water from residents of the Cape Fear River valley in North Carolina. From survey questionnaires of participants (N = 345), we analyze both quantitative and qualitative data.
The results of our ongoing analysis offer a number of insights. First, responses to open-ended questions indicate that some participants view ownership in multifaceted ways; they not only acknowledge co-ownership of their own individual data, but also co-ownership of the overall research effort at both the individual and community levels. Second, a large number of participants constructed explicit privacy rules around the timeliness of receiving results; a few even viewed the lack of timeliness as a serious failure of privacy rule coordination on the part of the scientists. Finally, quite a few participants indicated a necessary linkage in privacy rules to include their health care provider and expressed dissatisfaction with the lack of clinical guidance provided in report-back. Further findings and recommendations for future research will be discussed.