Combined Genetic Counseling Program Reading List The curation of the following list was a collaborative effort of members of the Association of Genetic Counseling Program Directors (AGCPD). While by no means a comprehensive list, the goal of having this combined reading list was to ensure that all genetic counseling students have similar access to the wide array of literature pertaining to the impact of genetic conditions on the community, family and person. It includes both fiction and non-fiction. For some GC programs, genetic counseling students are required to read books from this list as part of their training. For those interested in the profession of genetic counseling, the following reads will help provide context and a deeper understanding of how genetics intersects with the lived experience. Sincere thank you to the members of AGCPD. Title Author A Beautiful Mind. 1994 Sylvia Nasar A biography of John Forbes Nash, Jr., Winner of the Nobel Prize in Economics The story of a mathematics genius and his battle with schizophrenia. A Child Called It. 1995. Dave Pelzer One of the most severe cases of child abuse as told by the author who experienced the abuse. A Child Called Noah. 1979. Josh Greenfield Author’s account of raising a child with autism through the first five years of life. A Difference in the Family. 1981. Helen Featherstone An educator and mother of a severely disabled child describes the long road toward acceptance of disability. A Different Kind of Perfect. 2006 Cindy Dowling, Neil The writings collected are from parents who have children with physical or cognitive disabilities. Nicoll, Bernadette Thomas A Feeling for the Organism. 1983. Evelyn Fox Keller The author’s story of being a pioneer of cytology and classical genetics long before women in science were widely accepted. A Heartbreaking Work of Staggering Genius. 2001. Dave Eggers The memoir of a college senior who in the span of five weeks loses both his parents to cancer and inherits his eight-year-old brother. 1 A Hope in the Unseen: An American Odyssey from the Inner City to the Ivy League. 1999. Ron Suskind The story of a boy’s journey from dangerous Washington D.C. neighborhood through Brown and into the working world. A Loss for Words. 1987. Lou Ann Walker Born in the Midwest in 1952, Walker is one of three hearing daughters of Gale and Doris Jean Walker, both deafened as babies by illnesses. As the oldest child, the author served as her parents' "interpreter," dealing with outsiders. There is humor in her recollections but nothing lighthearted in accounts of crude or condescending reactions to her father and mother from indifferent people. Walker is candid in detailing her own frustrations and the burdens of life with the deaf. A Necessary End. 2001. Nick Taylor The author’s description of life with his dying parents. A Parent's Guide to Down Syndrome: Toward a Brighter Future. 1990 Siegfried Pueschel A Time to be Born. 1977. David Bell A physician’s account of four babies’ experiences in the NICU. A Wild Ride Up the Cupboards. 2005. Ann Bauer A story about the extraordinary things a mother will do in order to help her child. After Her Brain Broke: Helping My Daughter Recover Her Sanity. 2010. Susan Inman The author’s memoir describing her family’s nine year journey to help her daughter recover from a severe schizoaffective disorder. After the Tears: Parents Talk about Raising a Child with a Disability. 1985. Robin Simons Personal accounts by parents who have responded to the daily challenge of making a life for and with a disabled child. Alex, the Life of a Child. 1997. Frank Deford Alexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980 following a battle against the debilitating effects of cystic fibrosis, the number-one genetic killer of children. Alice & Oliver. 2016. Charles Bock Unflinching yet deeply humane portrait of a young family’s journey through a medical crisis. 2 Am I My Genes? 2012. Robert L. Klitzman Confronting fate and family secrets in the age of genetic testing. Am I My Genes? shows how real individuals have confronted the new information provided by genetic testing into their daily lives. The book describes – often in the person’s own words – how each individual has wrestled with the vast implications that genetics has for their lives and their families. Am I Next In Line? Confronting Hereditary Breast and Ovarian Cancer. 2007. Monique Achtman Am I Next In Line inspires readers to address the question of whether cancer in their family is hereditary. Achtman is referred to as a "pre-vivor" instead of a survivor, because after testing positive for the BRCA-1 cancer gene mutation she became vigilant about cancer surveillance and prevention. Amazing Grace. 1995. Jonathan Kozol This narrative depicts the perils of urban youth, including a high incidence of HIV An Alpha-1 COPD Love Story. 2011. Sally Everett The author’s account of living with COPD caused by Alpha-1. An Exact Replica of a Figment of My Imagination. 2008. Elizabeth McCracken Memoir of author’s life before and after the loss of her child in the ninth month of pregnancy. An Unquiet Mind – A Memoir of Moods and Madness. 2009. Kay Redfield Jamison Memoir of family’s and her own experience dealing with bipolar illness. Anatomy of Hope. 2003. Jerome Groopman The journey of discovery spanning the some thirty years of the author’s experience as an oncologist. Anna, a Daughter’s Life. 1993. William Loizeaux The author’s account of coping with the death of his daughter, who had VATER. Another Season. 1997. Gene Stallings A football coach writes about having a child with Down syndrome. Diane Tropea Greene Apron Strings: Inheriting Courage, Wisdom, and… Breast Cancer. 2007. A breast cancer survivor details her experience and her family’s genetic history of cancer. As Nature Made Him: The Boy Who Was Raised as a Girl. 2000. John Colapinto The bestselling account of the now famous “Twins” case that became a touchstone in the debates on gender identity and nature versus nurture 3 Autism and Sensing: The Unlost Instinct. 1998. Donna Williams The author explains how the senses of a person with autism work and how people with autism are ‘stuck’ at a stage in which they can sense but not interpret the world around them. Autobiography of a Face. 2003. Lucy Grealy Diagnosed at age nine with Ewing's sarcoma, a cancer that severely disfigured her face, Grealy lost half her jaw, recovered after two and half years of chemotherapy and radiation, then underwent plastic surgery over the next 20 years to reconstruct her jaw. This harrowing, lyrical autobiographical memoir, is a striking meditation on the distorting effects of our culture's preoccupation with physical beauty. Babies with Down Syndrome: A New Parents' Guide. 2008. Susan Skallerup Covering the best practices for raising and caring for children with Down syndrome through age five, this book is invaluable to new parents who have welcomed a baby with Down syndrome into their lives. Babyface: A Story of Heart and Bones. 2002. Jeanne McDermott In 1990 science writer McDermott gave birth to her second child. Although a prenatal amniocentesis had indicated she was carrying another healthy boy (her eldest, Jeremy, was then three), Nathaniel was born with a craniofacial abnormality and webbed fingers and toes (Apert Syndrome). Based on a journal she kept during her baby's first year, this book artfully combines fact and feeling to illuminate how McDermott and her husband, Ted, dealt with the drastically altered circumstances of their lives, and how they struggled to keep Nathaniel and themselves healthy. 4 Becoming Nicole: The Transformation of an American Family. 2015. Amy Ellis Nutt Powerful and illuminating book about one couple's journey in coming to accept and nurture their transgender daughter. Before and After Zachariah: A True Story about a Family with a Different Kind of Courage. 1988. Fern Kupfer The heart-wrenching story of one couple's courageous decision to have their severely brain-damaged son cared for in a residential facility. Before I Say Goodbye: Recollections and Observations from One Woman’s Final Year. 2000. Ruth Picardie A story of the final year of the life of a woman diagnosed with breast cancer. Being Mortal: Medicine and What Matters in the End. 2014. Atul Gawande Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end. Big Sister: A Journey of Genes and Heart. 2013. Anne Martin Powell Anne adored her severely disabled younger brother, yet when she learned she was pregnant and a carrier for his rare genetic disease; she faced a heart-wrenching decision. Blame. 2016. Tony Holtzman After writing many scientific articles at the interface of genetics and society, the author published this novel. Bloom: Finding Beauty in the Unexpected – A memoir. 2012. Kelle Hampton Bloom is an inspiring and heartfelt memoir that celebrates the beauty found in the unexpected, the strength of a mother’s love, and, ultimately, the amazing power of perspective. The Boy Who Loved Too Much: A True Story of Pathological Friendliness. 2017. Jennifer Latson The poignant story of a boy’s coming-of-age complicated by Williams syndrome, a genetic disorder that makes people biologically incapable of distrust. What would it be like to see everyone as a friend? Twelve-year-old Eli D’Angelo has a genetic disorder that obliterates social inhibitions, making him irrepressibly friendly, indiscriminately trusting, and unconditionally loving toward everyone he meets.