New Scientist Magazine Review
This is my site Written by Alex on July 8, 2009 – 6:32 pm   

A review of Chasing Medical Miracles in the latest issue of New Scientist magazine is below. I am proud of the fact that the book holds up under scrutiny from such a well-respected publication.

Review: Chasing Medical Miracles by Alex O’Meara

  • Book information
  • Chasing Medical Miracles: The promise and perils of clinical trials by Alex O’Meara
  • Published by: Walker & Company
  • Price: $25
  • Book information
  • When Experiments Travel: Clinical trials and the global search for human subjects by Adriana Petryna
  • Published by: Princeton University Press
  • Price: $24.95

FIFTY million people around the world are guinea pigs in clinical trials testing experimental drugs right now.

Apart from potentially risking their lives, participants must pass a gruelling battery of tests just to be allowed into some trials. Acceptance only means more tests, side effects and considerable disruption to their daily lives. So what’s in it for them?

As journalist Alex O’Meara explains in Chasing Medical Miracles, some take part out of genuine altruism, while some are looking for cures for their own illnesses. O’Meara, a lifelong diabetic himself, volunteered for a risky transplant of insulin-producing cells from the liver, and his story permeates the book.

More often than not, O’Meara finds, people choose to participate thanks to life’s great motivator: money. Clinical trials are big business, raking in $24 billion a year, and the cash they offer as compensation has become a sought-after way to supplement meagre wages.

This exchange of money, often involving people who are sick and vulnerable, underscores the murky ethical waters in which today’s clinical trials are mired.

The ill often feel compelled to take part in a trial in order to get medical care. Some unscrupulous researchers, frantic to recruit the large numbers needed to make their studies statistically valid, encourage this thinking. It can be hard for ill people to grasp that, at best, they are taking experimental medicine, and at worst, they are taking nothing at all.

Desperation – for money or medicine – is never a solid foundation for unbiased decision-making. How can a researcher be sure a person is truly providing informed consent? And if a person gets better on an experimental drug, what happens when the trial, and their drug supply, ends?

Desperation – for money or medicine – is never a solid foundation for unbiased decision-making

These ethical quandaries have come to a head in developing countries, where clinical trials are a burgeoning industry. Despite the fact that drug companies are moving their trials to developing countries, just 10 per cent of drug research addresses diseases that affect the world’s poor, says Adriana Petryna in When Experiments Travel. Such diseases make up 90 per cent of the global disease burden. Apportioning ethical and legal responsibilities is also becoming harder, she reports. As the numbers of subcontracters involved in a trial grows, whose primary concern is the patient?

In theory, international human rights frameworks such as the Nuremberg Codeshould ensure that participants are not taken advantage of. In reality, poor, largely illiterate populations are being exploited. The benefits to pharmaceutical companies are obvious – running costs are a fraction of those in richer nations. Furthermore, ethical regulations in poor countries are rarely rigorous, so researchers can get away with recruiting people into HIV trials by, say, telling them they will die without the experimental drug.

O’Meara unearths several such appalling stories – the result, he says, of drug company greed and the inability of regulators to oversee the mushrooming number of trials. The US Food and Drug Administration inspects less than 1 per cent of its 350,000 registered trial sites. Drug firms are running the show, with non-profit organisations undertaking just 30 per cent of trials.

Despite their flaws, clinical trials remain one of the best tools of modern medicine – a fact that O’Meara, for all his promises of journalistic non-bias, clearly appreciates. It is not his job, he says, to tell us “whether clinical trials are good or bad”, but it’s clear where his heart lies. He continues with his diabetes trial even after it has become clear that the transplant didn’t work, and even after his marriage has fallen apart as a result of his participation. “The study was important,” he writes. “If not for me, then for someone else.”

Priya Shetty is a health and environment writer in New York City

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