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The New Genetics: From Research into Health Care

Social and Ethical Implications for Users and Providers

  • Conference proceedings
  • © 1999

Overview

Editors:
  1. Irmgard Nippert

    1. Institut für Humangenetik, Westfälische Wilhelms-Universität Münster, Münster, Germany

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  2. Heidemarie Neitzel

    1. Rudolf-Virchow-Klinikum, Medizinische Fakultät der Humboldt Universität zu Berlin, Berlin, Germany

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  3. Gerhard Wolff

    1. Institut für Humangenetik und Anthropologie, Albert-Ludwigs-Universität Freiburg, Freiburg, Germany

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Table of contents (17 papers)

  1. Front Matter

    Pages I-X
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  2. Introduction: The New Genetics: From Research into Health Care — Social and Ethical Implications for Users and Providers

    1. Introduction: The New Genetics: From Research into Health Care — Social and Ethical Implications for Users and Providers

      • Irmgard Nippert, Heidemarie Neitzel, Gerhard Wolff
      Pages 1-5

  3. Opening Address

    1. Opening Address

      • Karl Sperling
      Pages 7-10

  4. The Provision of the New Genetics: In Whose Best Interest?

    1. Front Matter

      Pages 11-11
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    2. Americans’Attitudes toward Informed Consent for Breast Cancer Susceptibility Testing: Questions for Cross-Cultural Research

      • Gail Geller
      Pages 13-21

    3. Nondirectiveness — Facts, Fiction, and Future Prospects

      • Gerhard Wolff
      Pages 23-36

    4. Predictive Genetic Tests: Destiny or Danger?

      • Neil A. Holtzman
      Pages 37-45

  5. Providing the New Genetics in Primary Care: Problems and Perspectives

    1. Front Matter

      Pages 47-47
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    2. Genetic Services in Europe — Primary Care Genetics Is a Priority for Health Care Systems

      • Rodney Harris, Hilary J. Harris, J. A. Raeburn
      Pages 49-57

    3. Education in Genetics

      • Jörg Schmidtke
      Pages 59-64

    4. Genesis, Compulsions, Acceptability, and Future of Pre-Natal Sex-Selection in India

      • Jai Rup Singh
      Pages 65-72

  6. Can the Implementation of New Genetic Tests Be Safeguarded by Consensus Policy Recommendations?

    1. Front Matter

      Pages 73-73
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    2. Ethics and Genetics in International Perspective: Results of a Survey

      • Dorothy C. Wertz
      Pages 75-94

    3. Consensus and Variation among Medical Geneticists and Patients on the Provision of the New Genetics in Germany — Data from the 1994–1996 Survey among Medical Geneticists and Patients

      • Irmgard Nippert, Gerhard Wolff
      Pages 95-106

    4. The Case for Proposed International Guidelines on Ethical Issues in Medical Genetics

      • John C. Fletcher, Dorothy C. Wertz
      Pages 107-112

  7. Critiques on the Provision of the New Genetics: Pros und Cons from Consumer and Provider Perspectives

    1. Front Matter

      Pages 113-113
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    2. Statement on CF-Heterozygote Testing

      • Stefan Kruip
      Pages 115-118

    3. The Patients’ Perspective on the Provision of Genetic Testing

      • Alastair Kent
      Pages 119-123

    4. The European Alliance of Genetic Support Groups, Their Ethical Code and the Provision of Genetic Services

      • Ysbrand Poortman
      Pages 125-130

    5. What Could a Balance Look Like between Individual Autonomy and Society’s Need to Regulate?

      • Wolf-Michael Catenhusen
      Pages 131-133
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Keywords

About this book

ciples and recommendations on genetic service provision in a multidisciplinary way. At the workshop the main issues and principles that are presently emerging as integral parts of national and international recommendations on genetic service provision such as: - voluntary provision of services - protection of choices - patient autonomy - informed consent - nondirective counseling - confidentiality were discussed and the participants tried to assess how these principles are known, met or violated in practice according to the newest up-to-date research findings and to identify existing gaps in data provision, research and policy analy­ sis. The workshop brought together an international multidisciplinary group of well known experts including health professionals, molecular biologists, social scientists and ethicists as well as representatives of patient organizations and pol­ icy makers who presented and discussed the newest data and survey findings on selected ethical and social issues in the provision of new genetic tests. The main scientific contributors to this meeting have been awarded grants from ELSI, ESLA, BIOMED 1 and BIOMED 2 programs as well as national grants.

Editors and Affiliations

  • Institut für Humangenetik, Westfälische Wilhelms-Universität Münster, Münster, Germany

    Irmgard Nippert

  • Rudolf-Virchow-Klinikum, Medizinische Fakultät der Humboldt Universität zu Berlin, Berlin, Germany

    Heidemarie Neitzel

  • Institut für Humangenetik und Anthropologie, Albert-Ludwigs-Universität Freiburg, Freiburg, Germany

    Gerhard Wolff

Bibliographic Information

  • Book Title: The New Genetics: From Research into Health Care

  • Book Subtitle: Social and Ethical Implications for Users and Providers

  • Editors: Irmgard Nippert, Heidemarie Neitzel, Gerhard Wolff

  • DOI: https://doi.org/10.1007/978-3-642-58486-2

  • Publisher: Springer Berlin, Heidelberg

  • eBook Packages: Springer Book Archive

  • Copyright Information: Springer-Verlag Berlin Heidelberg 1999

  • Softcover ISBN: 978-3-540-65920-4Published: 15 July 1999

  • eBook ISBN: 978-3-642-58486-2Published: 06 December 2012

  • Edition Number: 1

  • Number of Pages: X, 169

  • Number of Illustrations: 13 b/w illustrations

  • Topics: Human Genetics, Theory of Medicine/Bioethics, Anthropology, Molecular Medicine

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