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Charitable funding of medical research: a great big con?

By Peter Sellick - posted Thursday, 16 October 2014


On two occasions this week I sat with old friends, one a professor of physiology and the other a spiritual director and writer discussing how requests for the funding of medical research has become all pervasive in our society. The latter related how she, on buying a bra, was asked by the shop assistant wether she would like to include a dollar in the sale price for the Breast Cancer Foundation. She resolutely refused. On the way to pay the bill we came across a raffle for the Multiple Sclerosis Society.

My wife and I went to an open garden last weekend and discovered that the proceeds from ticket sales were going to a new foundation to do research into a rare and fatal disease suffered by a person associated with the keepers of the garden. Requests for money for medical research have become ubiquitous as are the various days identified with disease with their accompanying ribbons, badges, public appeals, telethons, fun runs and other gimmicks.

While acting as a chaplain at a major local hospital I was amazed at a yearly display of medically oriented pressure groups. The inside of the hospital was given over to stall holders who were concerned with this or that disease. They were all enthusiasts, many spurred on by the death of a loved one brought about by the disease they now promoted.

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Has there ever been anything like this? What would we liken it to? It is a bizarre circus for the unwell, a competitive market, each stall-holder trying to lift the public consciousness of a particular disease. There appears to be a whole cohort of people who devote their lives to this. Poor souls!

It has become common for relatives of people who have died of a particular condition to announce the establishment of a fund for medical research into that condition. It seems that this is a part of the grief process, an attempt to do something positive so that others may not suffer the same fate. Medical research is seen as the only hope in a situation of grief. It is understood that if we can throw enough money at finding a cure that cure will eventually be found. There is a trade here, you give us money for medical research and we will give you hope.

Medical research should be funded but that funding should be decided by a peer review of people in the field. It is no good spending money on a disease if there are no researchers in the field or if there are no good ideas of approach. Contributors to medical research have really no idea how the money will be spent especially when professional organisations are employed to do the fundraising. It is often the case that a small fraction of the gift actually finds it way to research. I know of one medical research foundation in Perth that owns a flash building but does no research.

I suggest that one of the reasons there is so much promotion of medical research is that it is leveraged on our fear. We all hope that cures will be found for the myriad of conditions that will eventually kill us, and giving feels like a good thing to do. Our fear of dying or of getting sick is out of control because we have lost the art of dying well. As I have pointed out previously, when a diagnosis is given the battle begins. If one, on getting a bad diagnosis, refused to suffer chemo or radio therapy for the sake of a small extension of life and instead went about setting things in order in preparation for death, that one would be letting the side down.

One must do battle with death to the final breath. Acceptance is not an option. This unrealistic response has become predominant because the religious disciplines that would have enabled a peaceful ending without the expense and the distress of treatment have been almost universally eroded. What remains is the human capacity for self-deception. There appears to be an unhealthy focus on the extension of life, even if that extension is only a few months.

Part of the problem with the overwhelming push to raise funds from the public for medical research is that it sucks up the charity dollar so that other charities that are not medically oriented lose out. In going for quantity of life with great expense we are sacrificing the richness that comes from many other community activities. I hear that BHP Billiton is planning to give a large amount of money to charity. Let us hope that it does not go to more medical research! There are many other things we could spend the philanthropic dollar on. Our university sector is starved of funds as are our art galleries, symphony orchestras etc.

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There are scholarships for students to be funded, chairs in particular disciplines at universities. We could fund university offices in Florence with scholarships so students could learn first hand from Renaissance art and architecture. There are visiting scholars to be funded, artists in residence, lecture series and conferences. All these things enrich the life of the community. Life should not be mortgaged over to longevity. When we do that we become the living dead, the living who would avoid death at all costs, even if that cost is the richness of life.

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About the Author

Peter Sellick an Anglican deacon working in Perth with a background in the biological sciences.

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