Research

I promised to discuss the new research project for which Nanda had to sign a consent form and hand in yesterday.

First of all, it does not involve new or extra bone marrow or blood samples. It just involves existing bone marrow samples taken during her first four weeks of treatment.

I haven´t seen the whole consent letter but my brother summarised for me “the scientific part”. To quote:

“The aim of the study is to measure the levels of angiogenesis, MDR-1, MRP and indicators of hypoxia in the bone marrow samples taken routinely at diagnosis. These measures would then be related to the speed and extent (the level if any of minimal residual disease) of your child's response to the first four weeks of treatment. This is to help further understanding of the variations in the speed and extent to which the leukemia cells disappear from the bone marrow during the first four weeks of treatment. In many adult cancers the numbers of new blood cells (angiogenesis) and a low level of oxygen within the cancer (hypoxia) are recognised as making the tumours less responsive to treatment. It is not yet known whether the numbers of new blood vessels or low oxygen levels are important for making the treatment of childhood ALL more difficult. Also some cancers contain resistance proteins (MDR-1 and MRP) that may reduce the effectiveness of drugs such as vincristine.”

As I haven´t seen the whole consent document, I am not sure of the rest of its contents.

I am sure this consent letter has not been translated into the principal minority languages of England – Urdu, Punjabi etc – the principle ethnic minority languages of he hospital´s catchment area - let alone Nanda´s native language, an official language of the European Union. I am afraid that ethnic minorities, or many others with little literacy (whether UK or non-UK readers, writers, listeners or speakers of English) and those who don´t have a first idea about the science, are left in the dark.