Books March-April 2008

by Quest Staff on March 1, 2008 - 4:06pm

QUEST Vol. 15, No. 2

NOTE: If your local bookstore doesn’t have a book mentioned in Quest, usually it can be ordered through the store by providing the author’s name, title and/or publisher. Often, books also can be ordered online. Reviewed books are not available through MDA.

The Gift of Participation: A Guide to Making Informed Decisions About Volunteering for a Clinical Trial, by Kenneth Getz, 2007, 360 pages, $19.95, Jerian Publishing.

If you’ve ever considered enrolling yourself or your child in a clinical trial to test an experimental drug or other treatment, you may have wondered exactly what you’re getting into.

This book gives readers a significant amount of background material to help them with that question. It includes chapters on why people participate in trials, where to find trials, what informed consent for a trial really means, and what to do if things go wrong; as well as appendices covering the history of clinical trial regulations, landmark documents in this history, and directories of health associations and phamaceutical companies.

Author Kenneth Getz, who holds a master’s degree in business administration, is a senior research fellow at the Tufts Center for the Study of Drug Development at Tufts University in Boston and the founder of the Center for Information & Study on Clinical Research Participation in Dedham, Mass.

A foreword by Virginia Congressman Rick Boucher notes that the public is not always aware of the existence of clinical trials or eligibility to participate, even though such participation is essential to the development of new scientific knowledge.

Editor’s Note: Look for more information about participating in clinical trials in "Being a Co-Adventurer" (Quest, May-June 2008).

The Future of Disability in America by Committee on Disability in America, Marilyn J. Field and Alan Jette, Eds., 2007, 618 pages, $59.95, National Academies Press,

The Future of Disability in America is a comprehensive study on the past, present, and future ramifications of disabilities, and the impact of disability on medical, technological, financial and social structures.

Pointing to improvements needed in disability research and monitoring, access to health care and support services, and public and professional education, the study asserts, “Disability in the form of limited activities and restricted participation in social life results, in part, from choices society makes. The United States faces important decisions that could reduce — or increase — the extent to which people can live independently and be involved in their communities.”

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