Genomics England Participant Panel seeking to expand

[OvacomeSupport]

Good afternoon All

We have been approached by the Head of Engagement at Genomics England who has asked us to share details about an opportunity to join their Patient Participation Panel. They've said:

'The Participant Panel at Genomics England is seeking new members, to help ensure research participants remain at the heart of decisions about how their data is used. Eligible applicants will have consented to share their data with Genomics England through the NHS Genomic Medicine Service, the 100,000 Genomes Project or the GenOMICC COVID-19 Study.

For more information about what the Panel does and to read the recruitment pack, visit Genomics England’s website here: genomicsengland.co.uk/join-... . Interested people can apply directly through the form on the website. Applications close on Monday 5th June 2023. If you have any questions, please contact [e-mail]'

Please don't hesitate to let us know if there's anything we can support with.

Best wishes

Annie - Ovacome Support

[Shan67]

Thank you for this Annie - however I don’t think I qualify for the panel. Do I have to ask for my full genetic testing first - I know I don’t carry the braca gene though.

[Notage]

Sadly I don't think gynaelogical cancers are being genomically tested through the NHS so would nake most ladies ineligible. There are some health inequalities around access to genomic testing for people with gynaelogical cancers particularly rare ones when compared with our cancer peers with either breast cancer or other cancers. Something that needs to change.x

[OvacomeSupport Partner My Ovacome Team]

Hi there Shan and Notage

Thank you both so much for your replies. We've just gone back to the Genomics England team to get some further clarity about the finer details of the Participation Panel eligibility criteria will update you as soon as possible.

Best wishes

Annie - Ovacome Support

[Shan67 in reply to OvacomeSupport]

Thank you so much for your help Annie. If we don’t qualify though please would it be possible for you to set up a government petition we could all sign to ask for ovarian cancer patients to be included. If this is the case I might also contact my local MP to let her know. Best wishes Shan x

[OvacomeSupport Partner My Ovacome Team]

Hello All

Further to the discussion above we have heard back from Genomics England. They have confirmed that anyone who has had whole genome sequencing done either through the NHS Genomic Medicine Service (NHS GMS) or the 100,000 Genomes Project would be eligible.

For the 100,000 Genomes Project ovarian cancers including rarer types were tested. For the NHS GMS high grade ovarian cancer is included and some rarer gynaecological cancers. The NHS GMS is constantly expanding the list of cancers tested so this will change in future.

You do not need to carry any specific gene but as long as your cancer tumours were put through either the NHS GMS or the 100,000 Genomes Project, you will be eligible for the patient participation panel .

I hope this is helpful.

Best wishes

Anna

Ovacome Support

[Shan67]

Thank you Anna. Just so I am clear about this, are you saying that all high grade ovarian cancer should have been tested with NHS GMS after surgery?

[OvacomeSupport Partner My Ovacome Team in reply to Shan67]

Hi Shan67

The NHS GMS has the National Genomics Test Directory for Cancer (you can view it here: england.nhs.uk/publication/... ) which lists high grade serous ovarian cancer as eligible for BRCA testing and also HRD when eligible for first line treatment. This is commissioned under NHS England. Anyone who isn't sure what testing they have had should discuss with their oncology team.

Best wishes

Anna

[Shan67]

Thank you so much Anna for checking this - I have now applied to join the panel! X