Ethical Issues in Medical Genetics

Topics: Genetics, Medical genetics, Health Pages: 3 (1718 words) Published: June 24, 2013
WHO/HGN/ETH/00.4

Review of Ethical Issues in Medical Genetics
Report of Consultants to WHO Professors D.C. Wertz, J.C. Fletcher, K. Berg

World Health Organization Human Genetics Programme

Human Genetics Programme Management of Noncommunicable Diseases World Health Organization

WHO/HGN/ETH/00.4

Review of Ethical Issues in Medical Genetics
Report of Consultants to WHO Professors D.C. Wertz, J.C. Fletcher, K. Berg

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Table of contents...

References: ................................................................................................................................................... 91 LIST OF TABLES ............................................................................................................................................ 103 TABLE 1. RELEVANT ETHICAL PRINCIPLES IN MEDICINE ................................................................................... 2 TABLE 2. ETHICAL PRINCIPLES APPLIED TO GENETICS SERVICES ...................................................................... 9 TABLE 3. ETHICAL PRINCIPLES APPLIED TO GENETIC COUNSELLING .............................................................. 30 TABLE 4. PROPOSED ETHICAL GUIDELINES FOR GENETIC SCREENING AND TESTING ....................................... 42 TABLE 5. AUTONOMY AND INFORMED CONSENT ............................................................................................. 44 TABLE 6. PROPOSED GUIDELINES FOR PRESYMPTOMATIC AND SUSCEPTIBILITY TESTING ............................... 47 TABLE 7. DISCLOSURE AND CONFIDENTIALITY ................................................................................................ 58 TABLE 8. PROPOSED ETHICAL GUIDELINES FOR PRENATAL DIAGNOSIS........................................................... 63 TABLE 9. PROPOSED GUIDELINES FOR COUNSELLING PRIOR TO PRENATAL DIAGNOSIS ................................... 73 TABLE 10. WHY TERMINATION OF A PREGNANCY WITH AN AFFECTED FETUS IS DIFFICULT .............................. 77 TABLE 11. PROPOSED ETHICAL GUIDELINES FOR ACCESS TO BANKED DNA................................................... 86 TABLE 12. REVIEW OF ETHICAL ISSUES ........................................................................................................... 89
Preface
The international Human Genome Project (HGP) will rapidly make genetic information available on a worldwide scale previously impossible to imagine. All adults have a right, if they so choose, to know their genetic makeup and implications for the health of their potential offspring, to be educated about their own genetics, and to have the services available to act upon their knowledge. The HGP, while not raising generically new ethical issues in medicine, exacerbates old ones, especially in regard to equitable access to genetic services, privacy, disclosure of genetic information, and freedom of reproductive choices. The HGP holds great promise for advances in human health but has also increased the public 's concerns about genetics. To allay these concerns, to protect people and families with genetic disabilities, and to promote international cooperation, it is timely to discuss ethical issues in medical genetics and to propose guidelines on complex ethical issues for the providers of genetic services. Within the next decade, newborn and carrier screening, and screening for common disorders such as heart disease, cancer, and neurodegenerative diseases, may greatly increase the role of genetics within primary health care. The inclusion of clinical genetics services as an integral part of basic health care should, therefore, be supported. All governments and their agencies related to delivery of health care need to examine the adequacy of current genetics services and how these can be improved in ethically acceptable ways. This draft document reviewing ethical issues in medical genetics and genetic services in an international perspective and serving as background information relating to a shorter consensus statement "Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services" (WHO, 1998) was further revised by the original Consultants and prepared for publication. The entire content of the present version does not have the level of consensus among professionals that was reached in the Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services (WHO, 1998). Some ethical problems of medical genetics, e.g., abortion after prenatal diagnosis, choices about alternatives in assisted reproduction, and the status of the human embryo in genetic research, are highly debatable and, at this time in history, are issues beyond the reach of moral consensus among nations. It is also recognizable that the laws of nations differ with respect to these particular issues and that law is subject to debate and evaluation. The recommendations in this document and in the Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services (WHO, 1998) are intended as points of departure for genetics professionals and public health officials to develop policies and practices in their own nations.
Review of Ethical Issues in Medical Genetics
Part I General considerations
Introduction : Importance of Genetics
Hereditary conditions affect millions of families throughout the world. About 5% of all pregnancies result in the birth of a child with a significant genetic disorder, congenital malformation or disability. An estimated 43% of cases of severe mental retardation (IQ
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