Book Review: Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing

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Robert Klitzman’s “Am I My Genes?” explores a key question facing individuals in a genetic age: How does my genetic profile shape who I am and, in turn, what I believe? In-depth interviews with 64 people who have, or are at risk for, three diseases with identified genetic components (i.e., Huntington’s disease, breast and ovarian cancer, or alpha-1 antitrypsin deficiency), reveal that the answer is not clear-cut.

Klitzman intentionally interviews a cross-section of people with and without symptoms as well as those who have and have not had genetic testing to get a fuller picture of the impact of genetic information, and the biomedical uncertainty that comes with it, on people’s lives.

Should I be tested? Whom should I tell? What should I do? Why me?

The range of complex decisions, assumptions, rationales, and emotional responses across interviews reveals a common set of themes related to the physical, social, psychological, and moral quandaries that seem to go along with the revealment or concealment of genetic data. The issues involved in disclosure of one’s genetic status differed by categories of relationship: siblings, parents, children, and extended family.

Some avoided telling others, particularly elderly parents, to keep from burdening them. Yet there was pressure to tell siblings or children who would be at risk for the mutations because they may have opportunities to take preventive measures of some kind. Unfortunately, patients often wrestle with these issues without professional support. Klitzman urges clinicians and genetic counselors to take a clear role in helping patients to think through what, how, and when to disclose results of genetic tests to family members.

The book is largely descriptive in that the book is arranged thematically and the many detailed quotes from patients speak for themselves. Hearing the varied reactions and perspectives directly from individuals gives the reader a chance to witness how people “respond to the genetic information about themselves as a kind of Rorschach test — interpreting this information in a wide range of ways, based on their prior views and stories about themselves and other cultural and personal experiences” (p. 4). These perspectives give voice to the hidden struggles of those with genetic risks and show how genetic information increasingly intrudes on everyday life.

Klitzman contextualizes the experiences of his interviewees with pertinent theoretical frameworks, privacy issues, insurance, and gene politics. In conclusion, he cautions:

“Each year innumerable people consider and proceed to obtain genetic tests. They interpret these in highly subjective ways based on their personal and cultural beliefs, values, and agendas. Both public health priorities and commercial enterprises are propelling much research and practice. Gene patenting has unleashed industrial interests that seek profit from tests, and thus “oversell” the predictiveness and potential clinical value of certain assays, further confusing patients… We should fully neither embrace the hype around genetics nor dismiss the field– but rather, as individuals and a society, carefully judge how best to proceed. (p.322-330).”

Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing, by Robert L. Klitzman, M.D. Oxford University Press, 2012. 376pp. ISBN: 978-0199837168.

Breast Cancer Consortium founder Gayle Sulik is a social science researcher and writer affiliated with the University at Albany (SUNY) Department of Women’s Studies. With expertise in medical sociology and interdisciplinary community research, her scholarship has focused on medical consumerism, technology, cancer survivorship, health policy, and specifically the culture and industry of breast cancer. She is author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health (Oxford, 2011) as well numerous articles, essays, and book chapters on health and medicine.

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