Many organisations are involved in raising awareness about brain tumours. It is essential because of the relative rarity of these diseases. One also requires in-depth research for finding the elusive “cure”.
A diagnosis of brain tumours often lurches sufferers from anxiety to nearly suicidal ideation that often makes them do desperate things. Alternative therapies, herbal remedies etc. become the order of the day, often aided and abetted by the Internet. The practitioners make tall claims which have no scientific logic.
The worst off are the snake oil businessmen, often under the guise of taking your tumour samples. Now, this is a very contentious issue, and I will try to make it as simple as possible.
Research involves tumour tissue to do molecular experimentation. It would unravel the molecular pathways that are involved in the final clinical presentation. Once you sign away the tumour tissue, you also sign away the rights for any “commercial exploitation”. The devil lies in the details. I feel you are unlikely to get your money’s worth for the tumour tissue you have donated. Any “blockbuster” drug that might come off it will be the sole property of the organisation that took the tissue in the first place.
Things, of course, are not so simple. It is a very generic statement, and I am sure exceptions to the rule apply.
So should you give away the tumour samples? Yes, by all means necessary. However, not to the organisations but to respectable Government institutions where the public funds’ research.
What will be the benefit of this move? Whatever new research yields the outcomes, it has to be placed in the public domain which would make it easier for scrutiny and more importantly, for reproducibility in other geographical regions. There is no point in locking up the innovation. If the organisation pledges to do the same, then all the better!
There’s one more major concern- data privacy. What would happen to the data if the organisation and the company behind it go bust? In case of Government organisations, the ultimate control will remain in public hands.
I strongly feel that calls for tissue donation need to be understood in the right context; before you sign away your rights for a great common good.