Goals of research

There has been an outpouring of dollars in basic molecular research. Many clinicians have joined in with their labs to push for “clinically relevant research”. It is evident that there would be a lot of duplication and overlap between it.

For example, look at IDH gene in the pathogenesis of gliomas. We know it carries a prognostic significance. We also know about the molecular pathogenesis. How does duplicating the research across different labs helps us or makes us any wiser?

The answer lies in the pharmaceutical business goldmine. Loath to spend on basic research in molecular pathways, the research, instead has been farmed out to a network of labs. It is easy for anyone to form a company and then sell out by being acquired. It is excellent for research ecosystem as it brings about new innovative ideas, but there are some serious issues here.

Public funded research gets outpriced for the end users who have contributed in no small measure to the same. They need to become more aware of these repercussions. Shrinking federal grants for public funded research means that there is no adequate oversight and auditing of the labs that are doing the same thing. These are potentially very high stakes, and patent awards can make individuals pretty rich.

I agree that these are generalisations and that this opinion isn’t set in stone. I have based the above assertion on my reading of the situation as well as verbal accounts.

What is urgently required is a partnership at all levels. It is to focus on one idea that has the potential to work in brain tumours. Pool in resources, under legal agreements, to work on the different aspects of the same problem. The idea above is more akin to a hub-and-spoke model of research. The goal is the identify molecular pathway and understand its implications for radiation therapy.

Let’s say, hypothetically, IDH gliomagenesis is the new pathway discovered. One team to work at a molecular level to identify potential inhibitory points, other to identify molecules that bring about this change. Another side to study the effect of radiation therapy and the pathway. Aggregated results would avoid duplication and overlap and lead to faster translational outcomes.

The problem is that they end up leaving radiation as an after-thought. It should change.

The myth about tissue donation

 

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.