Character believes your privacy is essential to the work we do. This means that we are committed to ensuring that your privacy is built into the foundation of our research.
This means that we will ensure responsible data management and protection against any intentional or unintentional use, unauthorized access, disclosure, or re-identification of participants’ data.
This means we will ensure participants remain adequately informed through all stages of participation in any Character research project.
We will communicate with them clearly and conspicuously concerning: how, when, and what information and specimens will be collected and stored; generally how their data will be used, accessed, and shared; types of studies for which their data may be used; the goals, potential benefits, and risks of participation, including risks of inappropriate use or compromise of their information; and their ability to withdraw from any research project at any time, with the understanding that consent for research use of data included in aggregate data sets or used in past studies and studies already begun cannot be withdrawn.
Participants will always have the right to know what data is being collected and what it is being collected for.
This means we will only collect, use, process, and store participant information that is directly relevant and necessary to accomplish a legitimate Character purpose, and only maintain participant information for as long as is necessary to accomplish the purpose.
This means we will enable participants’ access to the medical information they contribute to Character in consumer-friendly and innovative ways. We will also provide educational resources to assist participants in understanding their health condition and to empower them to make informed choices about their health and wellness. This could include sharing general medical information, aggregate research data, research findings, information about ongoing research studies, as well as data collected about participants.
This means we will promote participant autonomy and trust through a dynamic and ongoing consent and information sharing process. This process will enable participants to engage actively in an informed and voluntary manner, and to re-evaluate their own preferences as data sharing, use requirements, and technology evolve.
Participants may withdraw their consent for future research use and data sharing at any time and for any reason, with the understanding that consent for research use of data included in aggregate data sets or used in past studies and studies already begun cannot be withdrawn.
Participants will be provided choices about the types and frequency of communications they receive, and about the circumstances under which they would like to be re-contacted for certain purposes, such as to collect additional information or specimens for supplementary research activities.
This means we will allow participants to easily report any inaccuracies in information they share with us and request that such inaccuracies be addressed in Character records.
This means we will never sell, either directly or indirectly, participant data for the purposes of advertisement or marketing. Additionally, we will ensure partner organizations are contractually prohibited from utilizing any individualized data from our platform for the purposes of marketing.
This means we will use known security best practices to ensure participant data remains Confidential, Available, and Integral. Confidential means only authorized parties (based on need to conduct the research) will be able to view the data. Available means the data will be ready for access when necessary. Integral means no modifications will be made to the data provided without the participants' knowledge.