Why do we encourage people from ethnic or indigenous backgrounds to join?
We often get asked why we focus so heavily on the “ethnic diversity” message. Everyone wants to help which is amazing, in an ideal world we could just have anyone and everyone join! We aim to increase awareness on the cause amongst the entire population regardless of their cultural heritage, but we aim to target people with culturally diverse backgrounds to take action and join the Australian Bone Marrow Donor Registry (ABMDR).
Patients from ethnic and culturally diverse backgrounds are grossly under-represented on the ABMDR which means they are less likely to find their lifesaving stem cell match, this can be their only chance to find a cure. Over 80% of people on the ABMDR are from North West European/North Caucasian backgrounds and the rest of the groups, such as Italians, Greeks, Asians, Middle Eastern and more are split across tiny percentages, with some having less than 1% representation.
So we know that patients who have any sort of ethnic or indigenous background will always struggle to find their lifesaving stem cell match due to under-representation, but there are a couple other reasons why we heavily focus on diversifying the ABMDR.
Did you know the science says that if we were to DOUBLE the number of people currently on the ABMDR as it is, it would only increase the chances of overall matching by 5%....and that’s because it’s heavily skewed to representing people with a North Caucasian background.
On top of this with limited funding and a limited number of samples that can be collected each year, people joining who have a North Caucasian background essentially uses up funding to test a sample type that we already have plenty of and doesn’t necessarily increase overall matching. So it becomes even more important to make sure the “right” type of samples are collected which are those with any story of ethnic or indigenous heritage!
What do mean when we say "ethnic background or heritage?"
The answer to this question and its definition is not always simple. But in basic terms, your ethnic or indigenous background refers to the country that your ancestors came from. It doesn't necessarily mean that you only have an ethnic background if you were born in another country. Your ethnic background can also be from where your ancestors came from (ie- parents, grand-parents, great-grandparents and so on). So for example your parents could be born in Italy to Italian parents but you were born in Australia, your ethnic background would be considered to be Italian.
Some people have a mixed heritage, for example you might be born in Australia but your father was born in Ireland to Irish parents and your mother was born in Italy to Italian parents, this means your ethnic background is half Irish and half Italian.
Essentially, the make-up of your blood and your "tissue type"/unique code is given its unique profile from your bloodline and ancestors. Your tissue type is what's used to compare to see if it matches with a patient's tissue type, that's why a patient is more likely to find their lifesaving stem cell match with someone who shares a similar ethnic background or heritage to them.
Here are some examples of countries that fall within the different categories which form the Australian Bone Marrow Donor Registry (ABMDR):
North Caucasian also referred to at times as North West European includes countries and areas such as the UK, Ireland, Germany and more.
Pacific Islander includes countries like Samoa, Fiji, Tonga and more
Southern European includes countries like Italy, Greece, Spain, other Mediterranean countries, Eastern European countries like Croatia and more
African includes countries like Algeria, Zimbabwe, Sudan and more.
Asian includes countries like China, India, Vietnam and more.
Middle Eastern includes countries like Lebanon, Egypt, Iraq and more.
Eastern Europe includes countries like Croatia, Hungary, Bosnia and Herzegovina and more.