The New Genetics: From Research into Health Care: Social and Ethical Implications for Users and Providers / Edition 1

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The ultimate goals of human genome research are the treatment, cure an d eventual prevention of genetic disorders but treatment and cure lag behind the ability to detect disease or increased susceptibility to di sease. Most genetic services today deliver diagnosis and counseling, e ffective treatment is rare. As more genes are identified there is grow ing pressure to implement new testing programs or broaden existing pro grams and otherwise increase both the number of available genetic test s and the amount of genetic information. The main issues concerned amo ng others are: voluntariness of services, freedom of choices, patient autonomy, informed consent, confidentiality of genetic information, pr ivacy, testing of minors, social discrimination and stigmatization.

Disc. ethical issues incl. informed consent, discrimination, voluntariness, confidentiality, etc

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Product Details

  • ISBN-13: 9783540659204
  • Publisher: Springer Berlin Heidelberg
  • Publication date: 8/13/1999
  • Edition description: 1999
  • Edition number: 1
  • Pages: 169
  • Product dimensions: 0.38 (w) x 9.21 (h) x 6.14 (d)

Table of Contents

Introduction: The New Genetics: Social and Ethical from Research into Health Care - Implications for Users and Providers 1
Opening Address 7
Americans' Attitudes toward Informed Consent for Breast Cancer Susceptibility Testing: Questions for Cross-Cultural Research 13
Nondirectiveness - Facts, Fiction, and Future Prospects 23
Predictive Genetic Tests: Destiny or Danger? 37
Genetic Services in Europe - Primary Care Genetics Is a Priority for Health Care Systems 49
Education in Genetics 59
Genesis, Compulsions, Acceptability, and Future of Pre-Natal Sex-Selection in India 65
Ethics and Genetics in International Perspective: Results of a Survey 75
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 95
The Case for Proposed International Guidelines on Ethical Issues in Medical Genetics 107
Statement on CF-Heterozygote Testing 115
The Patients' Perspective on the Provision of Genetic Testing 119
The European Alliance of Genetic Support Groups, Their Ethical Code and the Provision of Genetic Services 125
What Could a Balance Look Like between Individual Autonomy and Society's Need to Regulate? 131
New Genetics, New Ethics? 135
App Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services 161
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