Public policies are often determined by three main components: ethics, science, and social considerations. In the 21st century, among calls for ‘personalized medicine,’ few topics raise as much concern as genes, genetic diseases and genetic interventions. Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing, a book by psychiatrist and ethicist Robert L. Klitzman, MD., published by Oxford University Press, is timely, providing a valuable insight into the social considerations surrounding genomic medicine.
Dr. Klitzman, who is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University, interviewed 64 individuals who were sick, or had an increased risk of being sick, with one of several genetic diseases: Huntington, breast and ovarian cancer, and Alpha-1 antitrypsin deficiency (AAT). He provides an in-depth summary and analysis of the responses, opening a window to the interviewees’ lives, fears and dreams. In particular, the book reports their experiences in the familial context, their understanding of the disease and the science involved, their decision-making processes, and their views regarding relevant social policies. Dr. Klitzman, who is the author of When Doctors Become Patients, A Year-long Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist, and other works, provides a compelling and entertaining narrative that brings to life the struggles, realizations and often painful process involved in illness.
The reader learns a great deal from the interviews.
First, the interviewees are highly affected—mostly in negative ways—by these diseases. Bonnie, for example, who is at an increased risk of carrying a breast cancer gene, reports being terrified of the prospect of being tested positive. Such result, she claims, would hurt her more than help her, and would make her question her meaning in life (p.45). Others, such as Diane who had to undergo mastectomy, may feel depressed and as if they lost hope and control over their lives because of these genetic diseases (p.154).
Second, coping with these diseases in the medical context raises important ethical and professional issues. For example, as Dr. Klitzman claims, clinicians may be overeager to test for these diseases while ignoring the psychological and ethical considerations. Thus, Betty, suffering from AAT, was negatively surprised that a pediatrician tested her child for AAT without consulting with her first (p.55). Similarly, Laura, a graphic designer, with breast cancer mutation, reminds us that ‘bad’ genes come along with the patient, and that clinicians should thus acknowledge and care for the patient rather than the disease. (p. 37)
As Dr. Klitzman admits, the data provided in the book may not be wholly generalizable, as it pertains to a small set of people in a specific location (p.19). However, the book draws a general picture of the personal, social and institutional struggles faced by those who are, or may be, affected by genetic diseases, some of which being incurable. The insights will be of great interest to clinicians, bioethicists, medical humanists, policymakers, and the general public. Says Kay Redfield Jamison, author of An Unquiet Mind and more recently Robert Lowell, Setting the River On Fire: A Study of Genius, Mania and Character: “Dr. Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... an important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." As do the editors of Intima: A Journal of Narrative Medicine.—Zohar Lederman
Zohar Lederman
Zohar Lederman is a medical resident in emergency medicine at Assuta Ashdod hospital and a bioethics PhD candidate at the National University of Singapore. His PhD focuses on the ethics of One Health and culling as a public health measure. His other areas of interest include: end of life care, family ethics, the dual loyalty problem, ethics of infectious diseases and public health ethics. Lederman, who served on the editorial board of Intima: A Journal of Narrative Medicine, is a contributor.