100,000 genomes project - return of results

Connect to people like me Family history, genes and cancer
1

Hi, 

 

This post is for those who have enrolled into the 100,000 Genomes Project. 

 

I’m Sam and I am currently studying a Masters in Genomic Medicine. As part of this course I am conducting a research project on how the results from the 100,000 Genomes Project should be returned to participants. 

 

I would like to invite you to participate in this university project. This will involve completing an anonymous online questionnaire which will take around 5 minutes to complete. I am interested in finding out more about your views on the return of genomic results, whether you are still waiting for results or have already received them. 

 

Findings from this study have the potential to influence how genomic results are returned to patients within the NHS. 

 

Your time is valued enormously, thank you. 

 

samanthaboland.typeform.com/to/vmAQuI

 

2

Hi sorry  have only just seen your post.  I received my results via a letter with no information except no genetic link.  I phoned and 2/3 weeks later a doctor phoned back as I had a lot of unanswered questions.NowI havejust heard about the discovery of the new gene PALB2.  I was wondering if I had been tested for this? I don’t want to keep phoning the doctor. Sorry not sure how else this get information.