by Josh Forman, Head of Science, Education & Outreach
Abu Dhabi (UAE) is instigating compulsory pre-marital genetic screening from 1st October 2024, the UAE Department of Health has announced. This provides an interesting discussion point between the medical benefits and the ethical implications of it.
The screening programme that the UAE is instigating is to analyse 570 genes (autosomal recessive conditions), that relate to 840+ genetic disorders. You can read the full statement here. In a pilot study including over 800 couples, they found that 14% of couples needed some form of medical intervention and family planning based on the results. Premarital screening for beta-thalassemia has also been available for a number of years.
Fundamentally, this could eradicate rare genetic disease as a medical concern. It won’t get rid of the disease genes, it would just stop children being born inheriting two disease versions. This is exactly what has been shown through the Tay-Sachs Disease screening in the Jewish community. Disease instance goes down, but carrier frequency is maintained.
This, without question, would save countless families pain and heartache, and provides parents to-be with the prior awareness and knowledge. It would also save millions of hours of time in hospital for families and children. Plus, of course, it would save a lot of money.
Ultimately, this is why Jnetics run genetic screening – although we focus primarily on alleviating unnecessary pain and suffering.
The compulsory nature is, in all likelihood, the more controversial aspect. If this was in the UK, it would be considered a significant issue with regards to civil liberty and choice over your own medical data.
As this is being run by Abu Dhabi Public Health Centre, what it is happening with the data? Is it just going to be used for the medical identification of risk for genetic disease, or will it be used for further study in the future? Will the state use it in any other way? We can’t say either way.
I suppose it depends how much you trust the government, and this is a highly cultural point, that will be different in different places.
A positive comparison would be quasi-compulsory of pre-martial screening for beta thalassemia disease genes in Cyprus. Anyone that wishes to marry through the Orthodox church must have a genetic screen. Cyprus is a religious country, and a large proportion of the population marry through the church. Data suggests that beta thalassemia has effectively been eliminated in Cyprus.
Mandatory pre-marital screening for beta thalassemia is also in place across a number of countries in the Mediterranean and Middle East, including Turkey, Iran, Palestinian territories, Jordan and Saudi Arabia. Therefore, this is not a new concept for the region. One of the key reasons that this has been successful in the Middle East is due to legal issues around abortion, and genetic screening prior to pregnancy alleviates this. These programmes have a varied level of success, and unfortunately (with abortion being illegal in many of them), the only way of overcoming the risk of beta thalassemia carrier couples (when both partners carry the disease) is to cancel the marriage – which has not been a popular choice. (Saffi, M; Howard, N; 2015)
This is an interesting ethical conversation. Preserving life and eradicating an area of suffering on one side, but a invasion of civil liberty and choice on the other.
In the UK, we already have very high uptake of vaccinations and medical screening programmes (such as the heel prick test). These have had a very positive impact on the provision of healthcare. The NHS Jewish BRCA Testing Programme that we are proud to be a part of has been received overwhelmingly positively. We’re clearly happy to gain as much information about our health status as possible.
It’s worth considering.
I would also advocate that it is worth knowing your genetic carrier status before you even consider finding a partner. For example, if everyone was tested whilst at school, everyone would be covered. Logistically, it would be relatively simple as screening could be organised to occur in schools, on an annual basis. Plus, this way, there would be no pressure to cancel marriage plans, as all carrier statuses could be checked prior to this, and everyone would be aware from the outset.
