Consent and Confidentiality in Genetic Medicine
Genetic tests can tell you whether you have inherited a condition that is present in your family. NHS patients can now have a genome test (called a genome sequence) as part of the 100,000 genomes project. Genome sequencing can help identify whether your/your child’s condition has a genetic cause. The results may therefore help you make decisions about screening or treatment.
In this research, we want to find out about your experiences of genome sequencing, what you think about the consent process and about how results have been communicated to you. We hope that the findings from our research will help healthcare professionals and family members communicate better in the future.
This study has now closed to recruitment.
Findings so far:
Study results are being collated and analysed. Please click here if you wish to go to the study website.