Knowledge of the genetic basis of human diseases is growing rapidly, with important implications for pre-conceptional, prenatal, and predictive testing. While new genetic testing offers better insight into the causes of and susceptibility for heritable diseases, not all inherited diseases that can be predicted on the basis of genetic information can be treated or cured. Should we test everyone who wants to know his or her genetic status, even when there are no
possibilities for treatment? What is the role of the "right-not-to-know?" Do we test children for adult onset disorders because the parents just "have to know" or do we respect the children's right to choose when they are older? Do we allow commercial companies to offer genetic tests directly to consumers
without the proper oversight regarding what the test results will mean?
By using a creative approach that focuses on a single extended family as a case example to illustrate each chapter's key point, the authors elucidate ethical issues arising in the genetics clinic and laboratory surrounding many timely issues, including:
* prenatal and pre-implantation genetic diagnosis
* assisted reproductive technologies
* incidental findings in genetic testing
* gene patenting
* testing children for adult onset disorders
* direct to consumer testing
Ethical Dilemmas in Genetic Counseling: Principles through Case Scenarios is essential reading for anyone interested in the ethical issues surfacing in common genetics practice. Written exclusively by genetic counselors, it makes a significant contribution to the field of ethics in genetics and thus will appeal not only to genetic counselors but to physicians, nurses, and all those concerned with bioethics and social science.
Janice Berliner, MS, CGC, is a Board-Certified Genetic Counselor and Senior Genetic Counselor at Memorial Sloan-Kettering Cancer Center. She has served on numerous committees as well as the Board of Directors of the National Society of Genetic Counselors and the American Board of Genetic Counseling.
Chapter 1: Introduction to Clinical Ethics - Rebecca R. Anderson ; Chapter 2: The (micro) Array of Options for Preconceptional and Prenatal Testing - Daragh Conrad and Christy ; Stanley ; Chapter 3: The "ART" of Assisted Reproductive Technologies - Sonja Eubanks Higgins ; Chapter 4: Testing Children for Adult Onset Conditions - Dawn Allain ; Chapter 5: These are Not the Genes You're Looking For: Incidental Findings Identified as a Result of Genetic Testing - Curtis Coughlin II ; Chapter 6: Is That a Threat or a Promise? Direct-to-Consumer Marketing of Genetic Testing - Laura Hercher ; Chapter 7: Genetics and Patent Law - Rebecca R. Anderson ; Chapter 8: Ethical Issues in Genetic and Genomic Research - Dawn Allain and Kelly Ormond