Ethical Dilemmas in Genetics and Genetic Counseling

Principles through Case Scenarios

Edited by Janice Berliner, MS, CGC

Addresses dilemmas that both families and their providers face over the span of a lifetime
Focuses on the same family throughout the book as a case study for each discussion point, making it easy to follow
Authored exclusively by genetic counselors

Ethical Dilemmas in Genetics and Genetic Counseling

Principles through Case Scenarios

Edited by Janice Berliner, MS, CGC

Description

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.

Ethical Dilemmas in Genetics and Genetic Counseling

Principles through Case Scenarios

Edited by Janice Berliner, MS, CGC

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

Ethical Dilemmas in Genetics and Genetic Counseling

Principles through Case Scenarios

Edited by Janice Berliner, MS, CGC

Author Information

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.

Contributors:

Dawn C. Allain, MS, LGC
Division of Human Genetics, Department of Internal Medicine
The Ohio State University Wexner Medical Center
Columbus, OH

Rebecca R. Anderson, JD, MS, CGC
Department of Health Promotion, Social and Behavioral Health
College of Public Health
University of Nebraska Medical Center
Omaha, NE

Daragh Conrad, MS CGC
Department of OB/GYN MFM
Comprehensive Fetal Care Center
Wake Forest Baptist Health
Winston-Salem, NC

Curtis Coughlin II, MS, MBe, CGC
Assistant Professor Pediatrics
Children's Hospital Colorado
University of Colorado School of Medicine
Aurora, CO

Sonja Eubanks Higgins, MS, CGC
Murrrells Inlet, SC

Laura Hercher, MA, MS, CGC
Joan H. Marks Human Genetics Program
Sarah Lawrence College
Bronxville, NY

Kelly E. Ormond, MS, CGC
Department of Genetics and Stanford Center for Biomedical Ethics
Stanford University School of Medicine
Stanford, California, USA

Christy Stanley, MS CGC
Department of OB/GYN MFM
Comprehensive Fetal Care Center
Wake Forest Baptist Health
Winston-Salem, NC

Ethical Dilemmas in Genetics and Genetic Counseling

Principles through Case Scenarios

Edited by Janice Berliner, MS, CGC

Reviews and Awards

"This timely and well-referenced book uses the familiar Four Topics Method, outlined by Albert Jonson, Mark Siegler, and William Winslade, for the ethical analysis of genetics counseling controversies. The streamlined and intuitive nature of the Four Topics Method lends itself well to this concise, introductory book. The breadth of controversial dilemmas it covers is impressive, given its introductory nature. This collection of essays is sure to be a welcome addition to the library of anyone interested in genetics and genetics counseling." -- Lauren L Baker, Doody's

Ethical Dilemmas in Genetics and Genetic Counseling

Principles through Case Scenarios

Edited by Janice Berliner, MS, CGC

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