IntroductionA new research study is to examine the impacts of direct to consumer (DTC) access to genetic tests for serious psychiatric disorders.
The project, funded by the ESRC and the NWO, is a collaboration between Egenis and the Virtual Knowledge Studio at the University of Maastricht.
Dr Susan Kelly, who is principle investigator on the project for Egenis, said: ‘This research will examine the intersection of two important emerging technologies: genetic testing and the internet. The internet provides consumers with direct access to genetic tests and personal genetic information, potentially unmediated by healthcare professionals.
‘These developments raise questions about patient empowerment, regulation, and the ability of consumers to make health care and lifestyle decisions on their own, or in improved partnership with healthcare providers. The current and imminent introduction of genetic tests for serious psychiatric disorders presents an important arena for examining these and related questions, including impacts on understandings of self and psychiatric disorders.’
The research will apply innovative approaches to study DTC genetic testing internet sites to examine how products, genetic science, consumers and health information are represented. It will also examine claims and promises being made in the controversial area of psychiatric genetics.
It will explore how different user communities, including individuals affected with psychiatric disorders as well as their family members and advocates view the potential introduction of genetic tests for psychiatric disorders, particularly as direct to consumer products. This part of the study will involve user communities in the development of specific research questions.
Principle investigator for the Virtual Knowledge Studio is Professor Sally Wyatt. A research fellow is currently being recruited.