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

by Irmgard Nippert (Editor), Heidemarie Neitzel (Editor), Gerhard Wolff (Editor)

Overview

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.

Product Details

ISBN-13:	9783642584862
Publisher:	Springer-Verlag New York, LLC
Publication date:	12/06/2012
Sold by:	Barnes & Noble
Format:	eBook
File size:	4 MB

Table of Contents

Introduction: The New Genetics: Social and EthicalFrom Research into Health Care — Implications for Users and Providers..- Opening Address.- Session I: The Provision of the New Genetics: In Whose Best Interest?.- Americans’ Attitudes toward Informed Consent for Breast Cancer Susceptibility Testing: Questions for Cross-Cultural Research.- Nondirectiveness — Facts, Fiction, and Future Prospects.- Predictive Genetic Tests: Destiny or Danger?.- Session II: Providing the New Genetics in Primary Care: Problems and Perspectives.- Genetic Services in Europe — Primary Care Genetics Is a Priority for Health Care Systems.- Education in Genetics.- Genesis, Compulsions, Acceptability, and Future of Pre-Natal Sex-Selection in India.- Session III: Can the Implementation of New Genetic Tests Be Safeguarded by Consensus Policy Recommendations?.- Ethics and Genetics in International Perspective: Results of a Survey.- 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.- The Case for Proposed International Guidelines on Ethical Issues in Medical Genetics.- Session IV: Critiques on the Provision of the New Genetics: Pros and Cons from Consumer and Provider Perspectives.- Statement on CF-Heterozygote Testing.- The Patients’ Perspective on the Provision of Genetic Testing.- The European Alliance of Genetic Support Groups, Their Ethical Code and the Provision of Genetic Services.- What Could a Balance Look Like between Individual Autonomy and Society’s Need to Regulate?.- New Genetics, New Ethics?.- Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services.