The following resources are taken from Life on Wheels: For the Active Wheelchair User, by Gary Karp, copyright 1999, published by O’Reilly & Associates, Inc. To order, or get more information about Gary’s book, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.
Many people are reluctant to participate in clinical trials because they feel a sense of distaste for the idea of being experimented on, for being treated as if they were human guinea pigs. You’ve probably heard about the horrific medical experiments that were conducted on unwilling participants in Nazi concentration camps during World War II.1 You may also have heard about the shameful Tuskegee experiment, in which 400 African-American men with syphilis were left untreated for decades–even after a cure for syphilis became available–so that scientists could study the natural course of the disease.2 Those historical incidents along with several others–not to mention uncounted numbers of mad-scientist movies–have made many people wary of participating in clinical trials.
Fortunately it’s extremely rare these days for research subjects to be treated badly. Those past abuses have led to the development of strict ethical codes for the conduct of clinical trials. Since the mid-1960s participants in clinical trials have been the beneficiaries of strong ethical, legal, and procedural protections.
Newly published medical textbooks are typically two to three years behind the latest medical information and research findings. More than 3,000 medical journals, written by and for doctors and scientists, present the most recent discoveries. More and more people are getting involved in researching their own conditions and becoming more active in healthcare decision-making.
While there are numerous reasons for fully understanding your risks for late effects, there are also very good reasons why you might want to restrict your research to particular areas, get a friend or family member to help, or not research at all. Chapter 13, “Researching the Medical Literature,” in Nancy Keene’s book Working with Your Doctor outlines the pros and cons of researching. It also explains how to conduct a basic search, find experts in specific medical conditions, and use a medical library.
The following journal article citations are but a few of the thousands available on the late effects of childhood cancer. You can get the full text of these articles from your nearest medical school library, hospital library, or through interlibrary loan at your public library.
Written by Karen Parles, librarian and lung-cancer activist
“Prior to my lung cancer diagnosis, I was an art librarian at the Frick Collection. After treatment, I took classes (medical librarianship, evidence-based medicine, advanced Medline searching) and transformed myself into a medical librarian.
“Following my lung cancer diagnosis, I was appalled to discover the dearth of information available for lung cancer patients. As a research librarian, my instinct was to learn as much as possible about my disease, but the lack of patient information made this task difficult. After completing my treatment, I decided to create a websitewww.lungcanceronline.org. devoted solely to supporting the information needs of lung cancer patients and their families.
“While my ongoing work with other patients has been extremely rewarding, what I have learned about the politics, economics and realities of lung cancer has sickened me. Treatment and support services for lung cancer lag behind those of other major cancers due to the smoking stigma associated with this disease. A constant reminder of this is the inevitable question people ask me when they learn I have lung cancer,
SEBASTOPOL, CA — How are cancer cures developed? A step at a time, as a progression of clinical trials incrementally shows which treatment variation is better.
Enrollment in clinical trials is necessary if steady progress is to be made. In childhood cancers, enrollment in clinical trials is 60%. Because of the high percentage of families participating, the cure rate for childhood cancer has jumped from a meager 10% in 1970 to today’s overall survival rate of almost 70%. By contrast, adult cancers typically have only 3% of patients enrolled in trials. Trials which take years to fill mean that treatment advances are slow and expensive.
For high-risk cancers, clinical trials offer possible access to promising new treatments. Many promising biological treatments, such as Gleevec and Iressa, are currently being tested on a range of cancers.