Project Details


Little is known about consequences for people, when they use commercial DNA-self tests. This was for example recently reported by the RIVM about
these commercial DNA-self tests which are also referred to as Direct-to-consumer genetic tests (DTC-GT). There has been media attention for the
negative consequences of DTC-GT and in the clinical genetic centers and among general practitioners cases known where citizens have experienced
disadvantages. This includes for example consumers that have received unreliable information, which could lead to serious anxiety or distress, false
reassurance or uninformed decisions about their health. To minimize the risk of these potential negative consequences, insight is needed in the
expectations, needs and preferences of citizens and their doctors for responsible use of DTC-GT. This knowledge can help develop appropriate
educational and decision support.

The project studies the decision process of DTC-GT users and the medical and psychosocial impact. This will be done with the use of (group)interviews
and questionnaires. What expectations do citizens have of DTC-GT, how do they make decisions around using DTC-GT and how do they experience the
impact? Furthermore, the perspective of health care professionals will be studied. Via clinical genetic centers and general practitioners we describe and
analyze the experience of people who have used DTC-GT and the impact on their health care and psychosocial wellbeing. Moreover we will collect
experiences of users of DTC-GT who did not contact medical practitioners and random citizens about e.g. their information needs when they would
hypothetically consider DTC-GT. This knowledge will be used to develop support tools to help citizens in making well informed decisions about the use of
DTC-GT. In addition we will develop an implementation plan in which we will describe how these products can be brought to the attention to citizens. While
doing so, we will also pay attention to how general practitioners and other health care providers can be supported when assisting their patients when they
want to do DTC-GT, or already have received results.
Effective start/end date1/11/20221/11/2026