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Race, masculinity and genetic counselling.

During my conversation with Suresh Rambaran about Black men and prostate cancer I surprised myself by stating that I had never seen a Black man in a genetic cancer clinic, in the UK, in nearly 10 years of working in genetics counselling.

While it may be expected that less men seek genetic counselling for conditions which increase the risk of breast and ovarian cancer, there are genetic conditions that increase the chance of cancer for both men and women. Conditions like Lynch syndrome and familial adenomatous polyposis (FAP) syndrome that increase the risks of bowel cancer for example. I work in a diverse part of the country so even accounting for the expected differences, it remains both noticeable and curious to me that I cannot recall seeing a Black man for genetic counselling for any cancer condition. It is important to note that I have seen patients for a range of other non-cancer genetic conditions and although the numbers are often smaller than expected, I have seen Black men in these clinics.

Low numbers of men presenting in healthcare is well recognised. Men appear less likely to recognise symptoms, report them early or to adhere to screening. The health seeking behaviour of men with hereditary conditions that primarily affect women show similar trends though additional factors like being less likely to receive information or having lower risks of cancer can contribute to the differences observed.

For me, these issues raise questions about how personal and social perceptions of masculinity drive health seeking behaviour and even how they contribute to what genetic information is shared with men. The intersectionality of race and masculinity on health seeking behaviour has been considered for years. Studies have looked at the cultural norms, values and expectations that impact how men seek services. From the individuals we have spoken to through Genetics Engage we have heard that difficulties accessing services can be due to who professionals refer to specialist services like genetic counselling. Perhaps professionals may worry that patients might react negatively to referrals or at worst they may hold assumptions that they just would not benefit or be interested.

Reflecting on a month like Movember certainly makes me think about ways in which conversations can be had to better support men to engage in genetic services. Specific and tailored interventions just will not be possible without talking to Black men about what they want and need to offer services that improve their health.

Sasha

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Questions

Is there any evidence that Black people in the UK are diagnosed with cancer at later stages than others?

There is NHS data and charity data that confirms the poorer outcomes and later diagnosis of certain cancers in the Black population in the UK.

Information about the differences in experience, screening and diagnosis of cancer in Black people in the UK is publicly available from number of organisations. You can read more in the 2018 Race Equality Foundation briefing on ‘Cancer and Black and Minority Ethnic communities’ below:

http://raceequalityfoundation.org.uk/wp-content/uploads/2018/07/REF-Better-Health-471-1.pdf

There are good examples of efforts to address these inequalities. Increasing awareness and knowledge about risks and screening can empower people to ask for the health services they need. More culturally sensitive services and staff is also key in ensuring that people in the Black community can expect the same health outcomes of any other group in the UK.

If you need help and support you can also contact charities such as:

BME cancer communities (https://www.bmecancer.com)

Cancer Equality Care – (https://cancerequality.co.uk)

Can survive UK (https://can-survive.org.uk)

Sasha

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COVID-19 and BAME

What is your personal view about why there is a disproportionate risk of Covid-19 in the Black, Asian and minority ethnic populations in the UK?

Health inequalities are very complex and can have serious consequnces on the health and wellbeing of populations. Although there are genetic factors that are being researched around how people are affected by Covid-19 this information needa to be considered with the complex interaction with underlying structures.​​ Enviromental and social factors like housing, occupation, diet and underlying health conditions are often major determinants of our health outcomes and we need to explore more how they are distributed and why. This is why at Genetics Engage we are so passionate about improving the experience of health services like genetics for everyone.

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Black women in genetics Events

Celebrating Black History Month

Black women in Genetics

Our first event took place this year, on the last day of Black History Month, 31st October 2020. We started with a reflection and conversation about what it meant to be a Black woman Genetic Counsellor. Over 50 people attended this first event to hear Malebo Malope and Sasha Henriques respond to questions from Mavis Machirori on many issues around diversity, inclusion and the concerns around genetic counseling.

Genetics Engage: Sasha and Mavis talk to Malebo Malope about genetic counselling and the experiences of Black women who do the job, October 2020
Black women in genetic counselling – FULL AUDIO of the talk on genetic counselling and Black women who do the job, October 2020