Blinded by Hope, Dazzled by Detail
by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota
Stricken by cancer and facing the prospect of no successful treatment, who among us wouldn't at least consider experimental treatment? But who among us would agree to be experimented on without our consent -- thinking that what we were receiving was the best medical care?
As late as the 1960s, cancer patients were exposed to experimental doses of radiation without being adequately informed that they were taking part in research and not receiving proven therapy. A lawsuit was recently filed by the families of brain cancer patients from that time, against MIT and the physician-researcher who carried out radiation research on their loved ones. They claim that patients "were lured into an experiment with false hopes, and if they had known they would have asked not to participate in the project."
In their defense, MIT and the researcher suggest that "patients were seeking out this type of treatment because they did not have other hope."
Which perspective is closer to the truth, and are patients today at risk of being unwitting subjects when they seek medical care? The answer is that itís very unlikely because of regulations that were created in the late 1970s to protect research subjects, but some of the factors that led to cases like the one at MIT continue to exist today.Holding on to hope
Just as in the 1960s and before, todayís desperately ill patients understandably grasp for whatever hope is available, which can mean agreeing to participate in medical research. But the truth is that research participation is often a course of last resort, coming only after other options have failed. And for such sick patients, the chances of receiving medical benefit from research is depressingly small. We can see how the hopes of sick patients, coupled with the little chance that they will actually benefit, make for possible exploitation.Overwhelming information
Even when physicians do their best to inform patients about what it means to be in research-through the process known as informed consent -- patients can easily be overwhelmed by the amount, detail and complexity of what theyíre told. This is true for even the most well-educated patients, in both clinical care and research. But in research the stakes are greater since we ask patients to put themselves in harmís way so that we all can benefit from what is learned. It is too easy to over-promise research benefits and underestimate its risks, especially when patients have high hopes for the benefits.
Is it therapy or is it research?
It is easy to forget that medical research offers more uncertain risks and benefits than regular clinical care when each is delivered in the same hospital and by the same people.
When the same physician who has been caring for a patient suggests that research participation might be a good idea, it is understandable that patients have difficulty distinguishing advice about medical care from requests to participate in research-even though the motivations in patient care and research may well diverge.
A system of protection
Our system now requires that institutional review boards (IRBs) review all proposed research before patients can be recruited. This has no doubt gone far in preventing the exploitation of patients in the past such as unwitting radiation experiments or the notorious Tuskegee Syphilis Study. But only if we continue working to assure that the rights and interests of research subjects will be protected, can we expect societyís trust in the biomedical research enterprise and those involved in it.
The benefits of research to individuals and society are great, but today, as in the past, they cannot come at the cost of less than full respect for the individuals we ask to participate in it.
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.
Center for Bioethics and CNN Interactive.
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