Psychological factors that determine people's willingness‐to‐share genetic data for research

Abstract

Of all the information that we share, health and genetic data might be among the most valuable for researchers. As data are handled as particularly sensitive information, a number of pressing issues regarding people's preferences and privacy concerns are raised. The goal of the present study was to contribute to an understanding of people's reported willingness‐to‐share genetic data for science (WTS). For this, predictive psychological factors (eg, risk and benefit perceptions, trust, knowledge) were investigated in an online survey (N = 416). Overall, participants seemed willing to provide their genetic data for research. Participants who perceived more benefits associated with data sharing were particularly willing to share their data for research (β = .29), while risk perceptions were less influential (β = −.14). As participants with higher knowledge of the potential uses of genetic data for research perceived more benefits (β = .20), WTS can likely be improved by providing people with information regarding the usefulness of genetic data for research. In addition to knowledge and perceptions, trust in data recipients increased people's willingness‐to‐share directly (β = .24). Especially in the sensitive area of genetic data, future research should strive to understand people's shifting perceptions and preferences.

Controlling my genome with my smartphone: first clinical experiences of the PROMISE system

“…Having such autonomy over the data was perceived as a form of safeguard against data misuse. Especially young adults were particularly interested in decisional privacy [ 50 , 51 ]. The publicly funded project PROMISE developed a solution for these problems by providing a system of data transparency, security, and privacy, thereby reducing the risks carried by the patient while providing a high level of autonomy to decide on the where and when of data usage.…”

A preregistered vignette experiment on determinants of health data sharing behavior

“…Taking the contextual perspective into account, a data recipient can never be fully separated from the purpose for which the recipient plans to use the data. While each of the data types can be analyzed to provide a benefit to the individual data subject (e.g., improvement of diagnoses, recommendations on health-related behavior) and/or recipient, the public also appears to be willing to accept the use of health data for the public interest (Bearth & Siegrist, 2020; Waind, 2020)—that is, to improve public health. In both cases, individuals may perceive the data sharing to be useful.…”

Is there a “pandemic effect” on individuals’ willingness to take genetic tests?

“…In March 2020, we tested individuals' willingness to take a genetic test in a field survey in Switzerland sample (N = 1000). Our research builds on prior studies which emphasize that individuals cherish the protection of their personal health data [6,9,10], especially genetic data [11,13,14] because it is an infringement into physical privacy [19]. We thus tested whether different forms of storage to personal health data from genetic tests, would have different effects on citizens' willingness to take those tests.…”

“…Genetic data is a particularly sensitive form of health data, and individuals' willingness to even elect to take a test may be mitigated by their attitude toward genetic information and its use [11][12][13][14]. In this context, taking stock of individuals' willingness to conduct such tests is of paramount importance.…”