Informed Consent in Predictive Genetic Testing A Revised Model
This important book proposes revising the current informed consent protocol for predictive genetic testing to reflect the trend toward patient-centered medicine. Emphasizing the predictive aspect of testing, the author analyzes the state of informed conse
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Jessica Minor
Informed Consent in Predictive Genetic Testing A Revised Model
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Jessica Minor Greenville South Carolina USA
ISBN 978-3-319-17415-0 ISBN 978-3-319-17416-7 (eBook) DOI 10.1007/978-3-319-17416-7 Library of Congress Control Number: 2015941514 Springer Cham Heidelberg New York Dordrecht London © Springer International Publishing Switzerland 2015 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. Printed on acid-free paper Springer International Publishing is part of Springer Science+Business Media (www.springer.com)
Preface
This book grew from my PhD dissertation. I wanted to write about a topic that was cutting edge and would be applicable for several years. I had been thinking about the ethics of predictive genetic testing (PGT), particularly direct-to-consumer testing, for a while. Eventually I decided that even though I had heard some stories about predictive testing ending badly, I could not clearly say that the testing was unethical. Then I started to evaluate what was troubling in regards to PGT. Especially in the cases that did not turn out well, it seemed that one of the main issues was a lack of understanding. I believe PGT can be a great tool for medicine, but if there is a lack of understanding about the test, potential treatments, or long-term outcomes, then there is the potential for significant harm. While considering these issues, I remembered a plenary speaker in one of the American Society for Bioethics & Humanities conferences addressing future issues and concerns for bioethicists. One of the issues discussed was informed consent. After considering PGT some more, I decided that a more robust discussion on informed consent and PGT could prove valuable to the areas of bioethics, genetic testing, and genetic counseling research. After doing some more research I decided that a revised model of informed consent would be more appropriate for PGT, since there are some characteristics that differentiate PGT from other types of testing. Thes
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