This autumn sees an exciting new development in the MND Association’s DNA Bank. Researchers can now use the samples within it to understand why motor neurones die as well as what the triggers are for MND.
How the DNA Bank began
Beginning in 2003 and running until 2012, approximately 1,500 people with MND, 1,000 healthy ‘controls’ – often the partner or spouse of someone with MND – and a further 500 members of families affected by MND gave a blood sample to help researchers understand more about the genetic causes of MND.
When I say the genetic causes of MND, that’s both to understand the causes of MND in the small proportion of people who have a family history of this horrible disease, and also those where a subtle genetic difference, in combination with environmental and lifestyle factors may contribute to why someone develops MND. (For people with MND these genetic differences may also determine how their disease progresses).
What happened to the blood sample people gave is explained in detail in our research information sheet, but briefly: two tubes of blood were collected and stored in different ways as a source of DNA. As soon as the tubes were collected the sample was coded, removing the link with information that identifies the person who gave it.
The way to manage and store the DNA samples was considered and agreed upon by a range of experts in 2003 – ranging from people affected by MND, non-MND scientists and members of a research ethics committee – the latter were completely independent of the study.
The DNA Bank in the future
Fast forward over 10 years or so and we know more about the inherited form of MND. The techniques used to understand MND in the lab, and those to model whether a treatment might work, have advanced a long way too.
Strides forward along the way include the discovery of the ‘C9orf72’ gene – which accounts for about 40% of cases of the rare inherited form of MND – and the demonstration that it is possible to model motor neurone disease using so called ‘iPSC technology’ (iPSCs are induced pluripotent stem cells). The latter allows us a human model of living motor neurones for the first time.
MND researchers have started contacting us about using the samples we have stored for other, non-genetic research studies in MND – they want to use them to understand why motor neurones die in MND as well as what causes MND, including the creation of iPSCs.
The promise of these new techniques to get us further towards understanding and treating MND is too good to turn down, so we agreed that the researchers should be allowed to apply to use the samples for wider MND research studies. I’ve said ‘wider’ as participants only gave their actual consent for genetic studies.
We spoke to our Biomedical Research Advisory Panel, our Board of Trustees and an independent research ethics committee before deciding how to do this. Key to our decision making was respecting the wishes of people with MND. Some of those who took part in this project might object to the plans. So, we are explaining our plans as widely as we can, with the aim of reaching those that might object to the extension of use of the samples beyond studies for which they gave explicit consent.
Do you want to stop your sample being used as part of the DNA Bank?
If you gave your sample to be used in the DNA Bank and you don’t want it to be used any more, either for these new studies or if you’ve changed your mind about using the sample at all, please let us know. We can arrange to destroy your sample, meaning that it cannot be used in studies you don’t agree with.
You can contact us on 01604 611 880, email us on firstname.lastname@example.org or write to the Research Development team at the Motor Neurone Disease Association, PO Box 246, Northampton, NN1 2PR