Prenatal Testing and Disability Rights.

Prenatal Testing and Disability Rights

Erik Parens and Adrienne Asch
Editors
Georgetown University Press
Washington, DC
2000, 371 pages

This book is one in a series published in pan by the Hastings Center, a nonprofit research organization that explores ethical issues in the medical and life science fields. The end result of a project aimed at critiquing prenatal testing from a disability fights perspective, the book is a compilation of essays by members of the research project who examine prenatal testing from various angles. Contributors include scholars in the fields of medicine, ethics, law, special education, and philosophy. While the book clearly targets genetic counselors and members of the medical profession who work with expecting parents (nurses, midwives, primary physicians, obstetricians), it would also be very informative reading for rehabilitation professionals who work with parents of children with disabilities.

The book is organized into four sections. Pan 1, entitled "Overview and Context of the Project," consists of two essays. By summarizing discussions and opinions of the project group members, the editors introduce readers to some of the arguments for and against prenatal testing from the perspective of disability fights advocates and medical personnel. In addition, education and training of medical professionals and issues related to working with soon-to-be-parents are discussed. A brief overview of the past, present, and future of prenatal testing is also provided.

Part 2, "Parenthood, Disability, and Prenatal Testing," consists of six essays that seem to focus on a parent's right to choose. Personal accounts from two women (one with and one without a disability) who struggle with the thought of having a child with a disability lead into a discussion of how society frames disability. Also, a discussion of disability as a natural form of human variation rather than an abnormality is presented. Finally, the availability of testing and the factors that may influence parents to choose or not choose certain tests are examined.

Through the five essays in Part 3, "The Messages and Meanings of Prenatal Genetic Testing," the idea that prenatal testing and/or selective abortion sends a negative message about people with disabilities is explored. This leads into a discussion of some of the many reasons why an individual may or may not choose prenatal testing and/or abortion. Readers are encouraged to consider their beliefs about prenatal testing, about why they may or may not want prenatal testing, and about what they would do if they found out they might have a child with a disability.

Part 4, "Making Policies, Delivering Services," addresses issues relevant to professionals and policymakers. The five essays in this section examine what factors should determine or influence the types of tests made available to parents, what types of information should be discussed with parents, and when and how information should be presented to parents. In addition, information about legal concerns related to a physician's failure to offer prenatal tests is presented through a discussion of specific court cases. Finally, recommendations for training medical personnel and genetic counselors are discussed.

The editors did an excellent job of thoroughly exploring a controversial topic and presenting the varied arguments both for and against prenatal testing. The project group's struggle with reaching consensus on many of the issues that they discuss is reflected throughout the book and serves to validate the controversial and complicated nature of prenatal testing.

By sharing their struggle, the authors challenge readers to critically examine the stigma that is often associated with disability and how the mere concept of prenatal testing might help to reinforce that stigma. Readers are also challenged to examine their own thoughts and feelings about prenatal testing. In a society that continues to grow more and more diverse, this book serves to remind us that we all have different views and values, and that we need to become more aware of how easy it is to inadvertently impose our views and values onto others.

My only criticism of this book is that I found there to be a lot of redundancy, as many of the essays (mostly in Part 2 and Part 3) addressed similar information. This is difficult to avoid when presenting a debate though. I recommend that while this book could be read cover to cover, readers choose individual essays that appeal to them. All of the essays stand well on their own. As such, I would recommend using selected essays as additional reading material in graduate training programs for both medical and rehabilitation counseling personnel.

Amy S. Milsom, M.Ed.
Doctoral Candidate in Counselor Education
The Pennsylvania State University