Which would you rather participate in: a medical study or a medical experiment? Almost everyone prefers a “study”.
Since perceptions are so important for successful clinical trials, in 1995 the Advisory Committee on Human Radiation Experiments asked people what they associated with an “experiment”. “I envision all kinds of weird things done to the body, and I assume that's not true, but also I envision a medical experiment maybe... done in a laboratory sealed up somewhere where no one even knows what [is] going on,” replied one person.
Drug companies need volunteers to test products, so the image of medical research is crucial. In 2008, Eli Lilly funded a campaign to rebadge “guinea pigs” as “medical heroes”.
In a provocative essay in The Hastings Center Report, Carl Elliott, a bioethics gadfly, asks hard questions about the ever-more sanitised language of clinical trials. He points out that in the 1960s, bioethicists used language like “experimental subjects,” “human experimentation,” and “experimentation in man.” But nowadays, the word experimentation has disappeared even from key bioethics protocols such as the Helsinki Declaration.
Yet the clinical trials are experiments and sometimes disaster strikes. Earlier this year, for instance, one man died and four others were hospitalised in France in a trial of a drug called BIA 10-2474, which had been created by the Portuguese pharma company Bial.
Even bioethicists have been affected by the slow shift away from the language of risk to the language of altruism. Elliott writes:
The choice to abandon the word “experiment” is emblematic of a larger movement beginning in the 1990s, in which many bioethics scholars moved from being critics of the research enterprise to being its champions. Probably the most striking example is the argument now made by a number of prominent bioethicists that every citizen has a moral duty to enroll in research studies. “There is a prima facie obligation to participate in biomedical research,” a group from the Department of Bioethics at the National Institutes of Health has written—an obligation that includes even research sponsored and designed by the pharmaceutical industry. “Whether a study is publicly or privately financed,” the group insists, “has little bearing on the obligation to participate in that study.”
No surprises there, says Elliott in a characteristically caustic style: “As long as bioethicists worship in the same church as the scientists and the clinicians, it will feel natural for them to sing the same hymns.”
Neurodegenerative disease is often cited as a reason for requesting assisted suicide or euthanasia. So insights into the motivations of profoundly disabled persons who want to live -- like British physicist Stephen Hawking -- are valuable.
Another victim of ALS in the same league as Hawking is Mario Melazzini, the new chairman of the board of the Italian counterpart to the FDA in the US. He has been in a wheelchair for 14 years and is completely dependent upon carers. Nonetheless he expresses an infectious optimism about life.
When I started to look at my disease with fresh eyes, I understood it and made a fresh start on life. The moment I stopped thinking about what I could not do because of ALS, but what I could still do for myself, for my children and friends, my life changed …
Life is a gift, an asset which must be nurtured from the moment of conception to natural end, even with illness. Life must not be manipulated according to an ideology. We need to realise that in any condition, when properly supported, everything can be seen as a great opportunity … The only incurable thing is the will to live!
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