Procedural preferences and information needs
RISk‐based, death, ’
Participants drew on both their professional and personal experiences when stating their procedural preferences and information needs. Although broadly posed, this question elicited quite specific responses. One participant who worked in the area of knowledge transfer, for example, mentioned the availability of a ‘socially responsible licensing toolkit’ to help translate academic knowledge into practice.From a practical standpoint, our participants acknowledged the utility of an informed opt‐out consent procedure to enable optimal use of their data and biomaterial for medical research. This type of consent procedure implies that participants' data and biomaterial may be used for multiple studies in a similar research domain unless they explicitly object. It is often referred to as The type of data that can be shared (i.e., mammogram, blood/saliva and/or questionnaire data in the case of the PRISMA study),With whom the data can be shared (commercial vs. noncommercial),Whether data are shared (inter)nationally,The level of de‐identification/anonymity,Whether to receive general study outcomes and/or personal (genetic) test results,How feedback is reported andHow data sharing is handled after death.They also stated a preference for illustrative examples to aid their understanding. PRISMA participants would like to update their consent after a previously agreed time period, for example after ten years, when new data are added to their source data or when conditions for data sharing or third parties change. Table PRISMA participants' information needs regarding expanding the boundaries of previously obtained informed consent.
What conditions do a third party need to meet before my data will be shared?
With which parties will my data be shared?
What type of studies can be performed with my data?
What type of genetic research can be performed with my biomaterials?
Will my data be shared anonymously?
Why are commercial parties interested in my data?
Will I be informed of the general study results?
Will I be informed of personal test results, for example, genetic results? If not, please provide a reason.
Will my data be shared with integrity?
Will my data only be shared with parties whose primary goal is to progress medical science?
Will third parties be forbidden to pass my data on to other parties?
Who has the key to my identifying information?
Will all study results be published, including negative results?
Will the ‘Socially Responsible Licensing Toolkit’ be referenced?
How long will my data be stored?
How long will my consent be valid?
What happens with my data when I am deceased?Abbreviation: PRISMA, Personalised RISk‐based MAmmascreening.