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Personal genomics: UK users' and clinicans' experiences of direct-to-consumer genetic testing

Introduction

‘Direct-to-consumer genetic testing’ (DTCGT), also known as ‘online DNA or genetic testing for health’, is now easily purchased online.  These tests are promoted as enabling individuals to be more actively involved in their health screening and make life-style choices for a healthier future based on a DNA test.  However, there are concerns that these tests may not currently be clinically useful and that people may make health-related decisions on the basis of poor quality information, without the professional healthcare support that is associated with conventional genetic testing in the NHS.    Little is known about people’s experiences of online genetic testing in the UK, how its benefits and risks are experienced by people who buy these tests, or the views of genetics professionals who may counsel them about the results.

This PhD student research project aims to find out why people buy online DNA tests for health screening reasons, how they understand the test results and what impact it has on them and their family.  The research will also establish how geneticists help people who have bought a genetic test online and what they think the impact of these tests are on the consumers and NHS services.  The research findings will be used to suggest the possible implications for the NHS of this personal approach to health screening.    

 

Methods

The researcher will interview members of the public who have bought an online DNA test for health information, and genetics professionals who have counselled people who have bought an online DNA test.

 

Additional Information

For more information about the project, please read the Information Sheet and Consent Form (links on the right of this page) which outline what you would be required to do if you participate in this research study.  You can also e-mail Teresa Finlay (PhD student) on finlaytm@cardiff.ac.uk for further information.

 

Interested in Participating?

If you have bought/had an online DNA test for health screening, are a UK resident of 18 years or older, and are interested in taking part in this study please read the additional information (see links on the right of this page) and then email finlaytm@cardiff.ac.uk

 

Funder

The study is supported by Cesagen and the ESRC, and is being conducted by a PhD student at Cardiff University School of Social Sciences.  The project is being supervised by Professor Adam Hedgecoe and Dr Michael Arribas-Ayllon.

 

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