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Ethical and legal issues in medical genetics

Part 1. Genetics

1.6. Genetic Medicine and Clinical Genetics

Short Specialist Review

  1. Mary Kay Pelias

Published Online: 15 JAN 2005

DOI: 10.1002/047001153X.g106314

Encyclopedia of Genetics, Genomics, Proteomics and Bioinformatics

Encyclopedia of Genetics, Genomics, Proteomics and Bioinformatics

How to Cite

Pelias, M. K. 2005. Ethical and legal issues in medical genetics. Encyclopedia of Genetics, Genomics, Proteomics and Bioinformatics.

Author Information

  1. GenELSI Consulting Inc., New Orleans, LA, USA

Publication History

  1. Published Online: 15 JAN 2005

Abstract

The foundations of ethical and legal issues in medical genetics lie in the evolution of the physician–patient and researcher–subject relationships. As patients and subjects have acquired protection of their personal autonomy, parallel doctrines of informed consent have developed in clinical practice and biomedical research. Issues of genetic testing in children, newborn screening, and use of archived tissue samples have been widely studied and at least partially resolved. Issues derived from concerns about genetic privacy and nondiscrimination include questions about recontacting patients when new information becomes available and about a possible duty to warn relatives who are not patients but who might be at risk for a genetic disorder or disease. Confidentiality issues have arisen in policies and practices in the insurance industry and in providing safety and benefits in the workplace. Finally, new concerns about privacy, discrimination, and social stigmata arise in pharmacogenetics as researchers become more proficient at tailoring pharmaceuticals to particular racial and ethnic groups.

Keywords:

  • beneficence;
  • personal autonomy;
  • informed consent;
  • privacy;
  • discrimination;
  • newborn screening;
  • archived tissue samples;
  • pharmacogenetics