The US National Institute of Health (NIH) has announced it plans to create a public Genetic Testing Registry (GTR). The database will contain information submitted voluntarily by genetic test providers. It aims to improve the levels of information accessible to consumers, researchers and healthcare providers, about the availability, validity and clinical usefulness of genetic tests. According to the NIH, there are more than 1,600 genetic tests available to patients and consumers, but there is no single public resource that provides detailed information about them.
'The need for this database reflects how far we have come in the last 10 years', said NIH Director Dr Francis Collins. 'The registry will help consumers and health care providers determine the best options for genetic testing, which is becoming more and more common and accessible'.
Key functions of the GTR will include encouraging providers of genetic tests to enhance transparency by publicly sharing information and providing a reliable resource for the public, allowing them to locate laboratories that offer particular tests. Furthermore, since the underlying goal of the database is to advance research, the GTR will provide an invaluable data-sharing facility for research and new scientific discoveries.
The actual database will be housed at the NIH and will be overseen by Dr Collins. 'Our combined expertise in biomedical research and managing such large databases makes NIH the ideal home for the registry', said Dr Collins.
In a statement, an NIH spokesperson said they 'will engage with stakeholders — such as genetic test developers, test kit manufacturers, health care providers, patients, and researchers — for their insights on the best way to collect and display test information' and that they would also seek the advice of other government agencies such as the Food and Drug Administration (FDA). The NIH have not yet said how much the database will cost to develop or maintain, but have confirmed that the National Center for Biotechnology Information will be responsible for its development, and that it is expected to be 'available in 22053'.
The NIH's plans have been well received, and the Genetic Alliance, together with the Coalition for 21st Century Medicine, hailed the GTR as 'a wonderful step forward for genetic testing and the integration of genetics into medicine'.
There is no equivalent database in the UK, or any plans to develop one, despite the UK's PHG Foundation, which campaigns for equal access to innovations in genomics and biomedicine, having repeatedly highlighted the need for such a system.