BRCA alterations and Lynch syndrome in South Asian communities

What’s the title of the study?

Exploring the psychological and social impact of Lynch syndrome, BRCA1 and BRCA2 alteration within South Asian communities using photo elicitation. ERF - Lynch and BRCA.

What’s the project about?

Some people are born with genetic alterations that increase their chance of developing certain cancers. Finding out you have one of these genetic alterations can affect many parts of your life. It can shape how you think about your own health, your family’s health, and the future.

This study focuses on people living with Lynch syndrome, or a BRCA1/BRCA2 alteration. Lynch syndrome is an inherited genetic condition that increases the chance of developing certain cancers, including breast cancer. BRCA1 and BRCA2 are genes that usually help protect against cancer by repairing DNA damage. Inherited alterations in these genes can increase the risk of breast cancer.

The researchers want to better understand the psychological and social impact of living with Lynch syndrome or a BRCA1 or BRCA2 alteration for people from South Asian backgrounds.

The study will use one-to-one interviews and a creative approach called photo elicitation. This means you’ll choose or take a photograph that helps represent part of your experience, and use it as part of the conversation.

Who’s organising it?

Name of project lead: Saman Arzoo Hussain

Job title: Trainee Clinical Psychologist

Organisation: University of Leeds

Email address: ll14s8h@leeds.ac.uk

Who can take part?

You can take part if you:

• Have a confirmed diagnosis of Lynch syndrome, or a confirmed BRCA1 or BRCA2 alteration

• Identify as being from a South Asian background

• Are aged 18 or over

• Currently live in the UK

You won’t be able to take part if you are currently having genetic testing but do not yet have a confirmed diagnosis.

Why do you want me to be involved?

People’s experiences of hereditary cancer conditions are not all the same. But the experiences of South Asian communities have not previously been explored in this way within UK cancer genetics and hereditary cancer research.

By sharing your experience, you can help researchers build a fuller picture of what it’s like to live with an inherited cancer risk. This could help inform future research and recommendations about care, information and support.

What will you ask me to do?

You’ll be asked to take part in 1 interview, lasting up to 1 hour. You can choose to have the interview:

• Online by video call on Microsoft Teams

• By telephone

• Face-to-face, if you live in West Yorkshire

Travel expenses can be supported for face-to-face interviews. An interpreter can also be arranged if needed.

Before the interview, you’ll be asked to choose an image, or choose or take a photograph, that represents something about your experience of receiving and living with your diagnosis.

The photograph will be used as part of the conversation. You’ll also be asked about receiving a diagnosis, living with an inherited cancer condition, wellbeing, relationships with others and what helps you cope.

You do not have to answer any question you do not want to answer. You can also take a break or stop the interview if you wish.

As a thank you, you’ll receive a £25 shopping voucher after completing the interview.

How do I get involved?

To take part, or ask any questions about the study, contact Saman Hussain by emailing ll14s8h@leeds.ac.uk

When’s the deadline?

3 May 2027