September 2007, Volume 4 Issue 4

New Book Looks at "Why Participation Matters"

When the online publisher, Centerwatch, began to post information on the Internet about clinical trials in the mid-1990s, co-founder and CEO Ken Getz was unprepared for the reaction it evoked. Visitors to the site flooded Getz’s inbox with questions about clinical research. That groundswell of interest gave Getz his first clue that there was a widespread hunger for knowledge about the field, and in 2002, Getz and co-author Deborah Borfitz published their first book, Informed Consent: A Guide to the Risks and Benefits of Volunteering for Clinical Trials. Over the next three years, Informed Consent distributed and sold 260,000 copies and became a valuable resource for some of the more than two million Americans who enroll in clinical trials each year. Now Getz is taking a fresh look at the subject. Giving the Gift of Participation: A Guide to Making Informed Decisions about Volunteering for a Clinical Trial is due to be published in September with an expanded overview of this rapidly growing field.

“The new book really looks at why participation matters,” Getz explains. “Whereas the first book was really a ‘how-to’ – how to find a clinical trial, what questions to ask, how to protect your rights as a volunteer – this book addresses what clinical participation means and how it helps to advance medical knowledge.” Practical information on subjects like insurance coverage, compensation, and tax ramifications for clinical research volunteers also is included.

With a foreword written by Congressman Rick Boucher of Virginia, and a back cover endorsement from Tour de France winner and cancer survivor Lance Armstrong, Giving the Gift of Participation offers a road map into a world many readers are just beginning to explore. Boucher, who has sponsored a Congressional Resolution honoring clinical trial participants (see The Participant, July 2007), notes that the study of disease and the development of treatments can require years of work and hundreds of millions of dollars. “But until the medicine is tested in people, researchers cannot be sure that it will be safe and effective in patients,” he writes.

CISCRP’s 2003 launch also helped focus the new book’s direction. “It was essential to helping me understand what was missing and the role this book could play in the arsenal of educational resources CISCRP would make available to the public,” Getz explains. As the organization’s founder and Board Chair, Getz proudly notes that proceeds from the sale of The Gift of Participation will be used to help fund CISCRP’s work on behalf of public education.

As the need for new therapies and treatments expands, Getz expects the need for information about clinical research participation will grow. That’s where he hopes The Gift of Participation will have its greatest impact. “Ideally, I would like to see the lay public and prospective participants get the book and use it as a guide to be more intelligent in the way they learn about and make choices about clinical research,” he relates. “I’d be really happy to know that people are using it as one of many inputs in their decision-making about clinical research participation.”

The Gift of Participation: A Guide to Making Informed Decisions about Volunteering for a Clinical Trial can be purchased through the CISCRP Bookstore at www.ciscrp.org/e-store/store.asp or by phone at 1-888-CISCRP3. Copies also may be obtained at major online and retail booksellers.

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