The Genetics Clinic of the Future
The Genetics Clinic of the Future (GCOF) kick-off meeting took place recently in Brussels. What is the project and what it does it means for patients?
Technology used for next-generation sequencing (NGS) of DNA has rapidly developed over the past five years so that the cost and time it takes to read an individual’s DNA is now dramatically lower. Consequently, new genome technologies like NGS are steadily being adopted for use in the diagnosis of genetic disorders.
The idea behind the GCOF Project is to map the opportunities and challenges that surround the clinical implementation of these technologies so that the needs, interests and concerns of patients and other relevant stakeholders are taken into account in the future.
Complex questions on issues such as data sharing and informed consent need to be addressed due to the confidential nature of personal data produced by such technologies. Through the GCOF Project, the hope is to be able to understand how to harness the potential of these technologies for health care while respecting fundamental ethical and regulatory frameworks.
To ensure that the expectations and needs of society, and in particular patients, are met in the broad implementation of these technologies, the GCOF will engage all relevant stakeholders (patient representatives, genomics researchers, clinical geneticist, bioinformaticians, policy makers, ethics experts etc.) in dialogue and consequently produce recommendations on how to incorporate technologies such as NGS into the diagnosis journey.
Within this project, EURORDIS will collaborate with experts from other project partners to carry out a survey on patient perspectives. The results of this survey will be published as a white paper, which will include recommendations for new approaches to the collection, storage and distribution of clinical data.
For more information on the project email mathieu.boudes@eurordis.org.
Eva Bearryman, Junior Communications Manager, EURORDIS