Interested in learning more about genetics, genomics, and public health through books? Join us on TikTok (https://www.tiktok.com/@nccrcg) to talk about books that range from fictional that highlight the effect a genetic condition can have on an individual and their family to non-fiction works that discuss the ethical, legal, and social implications of genetic research. If you have a good book (fiction or non-fiction) you would like to recommend for this year’s Book Club, email us at firstname.lastname@example.org.
Disclaimer: This is not a comprehensive list of books related to genetics and public health. Nor are books listed necessarily endorsed by the National Coordinating Center for the Regional Genetics Network (NCC), host of Public Health Genetics Week. If you have any questions about the book club, please do not hesitate to reach out.
The Brillant Girl with the Special Chair
By: Zakiyyah Evans
Having the courage to stick up for yourself can be extremely challenging, especially when you’re a child.“The Brilliant Girl With The Special Chair” is a cheerful book about a young girl coming to terms with her physical disability while learning self advocacy skills. With the aid of a compassionate grandfather, this story explores her dilemma of how to fit in with peers, her immobility and her wheelchair. With sunny illustrations by the Vector family, Zakiyyah Evans winsome story evokes healthy dialogue that encourages children in learning about disabilities with respect and concern while developing self advocacy skills.
The DNA Book
It’s inside every living plant and animal, from the tiniest seed to the person standing next to you, but how much do you know about DNA? This book gives children an in-depth look at DNA and its role in all living things–from why we have different-colored eyes to why we age. Discover what DNA is, what it does, and how it shapes our lives, including inheritance and why we look like our parents; forensic science and how DNA evidence helps catch criminals; and genetic engineering and if we could bring dinosaurs back to life. With fun illustrated DNA characters, clear diagrams, and astonishing photographs, children will love learning about themselves and this all-important molecule.
House of Robots
By: James Patterson
Severe Combined Immune Deficiency is a rare autosomal recessive condition that receives a lot of attention thanks to popular culture’s depiction of “the bubble boy.” This commercial middle grade title offers a more balanced and realistic depiction of the condition through the main character’s sister, Maddie. The link to robots not only has kid appeal, their germ-free nature makes a lot of sense.
Mia Lee is Wheeling Through Middle School
By: Melissa Shang
Hello, sixth grade! Mia Lee is a stop-motion filmmaker with a wheelchair and a lot of sass, trying to survive her new middle school. Which doesn’t seem so easy when she’s running for Video Production Club President against certified Middle School Mean Girl, Angela Vanover. Things get weird when Angela starts being nice to her – well, when other people are around, at least. But when Mia’s campaign posters for VP Club President mysteriously vanish – no tape, no poster, no nothin’ – the presidential race gets real. With the help of her brain files, an awesome aide with keys to the whole school, and her friends, Rory, Daniela, and Caroline, Mia finds herself on a mission to prove Angela isn’t just an ordinary middle school mean girl, she’s a thief!
Pack of Dorks
By: Beth Vrabel
Lucy is the second most popular girl in fourth grade. She maintains her social standing by obsequiously following her “best friend,” queen bee Becky—even when that means succumbing to peer pressure and giving Tom Lemmings a quick kiss during recess. Suddenly, Lucy finds herself being made the butt of jokes and is no longer in her exalted position as a popular kid. When groveling doesn’t work, Lucy opens up to spending time with other kids she had previously overlooked and finds herself making some real friends in the process. This book doesn’t soft-peddle the strange cruelty that kids inflict on one another, nor does it underestimate the impact. At the same time, it does not wallow unnecessarily. Instead, Lucy finds joy in her new little sister and helps her family gain perspective as they struggle to come to terms with the baby’s special needs.
By: Nnedi Okorafo
Akata Witch transports the reader to a magical place where nothing is quite as it seems. Born in New York, but living in Aba, Nigeria, twelve-year old Sunny is understandably a little lost. She is albino and thus, incredibly sensitive to the sun. All Sunny wants to do is be able to play football and get through another day of school without being bullied. But once she befriends Orlu and Chichi, Sunny is plunged in to the world of the Leopard People, where your worst defect becomes your greatest asset. Together, Sunny, Orlu, Chichi and Sasha form the youngest ever Oha Coven. Their mission is to track down Black Hat Otokoto, the man responsible for kidnapping and maiming children. Will Sunny be able to overcome the killer with powers stronger than her own, or will the future she saw in the flames become reality
Inside Hudson Pickle
By: Yolanda Ridge
A spot on the basketball team isn’t the only thing Hudson’s looking for. Cut from AAA hockey, seventh-grader Hudson Pickle needs to make the basketball team. But, after having an asthma attack at the first tryout, his chances aren’t looking good. Then it’s discovered that his uncle Vic has a genetic respiratory illness. Could this mean Hudson has something worse than asthma? And while this DNA mystery is being unraveled, will the truth about what happened to his father finally be revealed as well? Sometimes the pains of growing up come from unexpected places. And so do the rewards.
By: RJ Palacio
August (Auggie) Pullman was born with a severe facial difference (Treachers Collins) that, up until now, has prevented him from going to a mainstream school. Starting 5th grade at Beecher Prep, Auggie wants nothing more than to be treated as an ordinary kid—but his new classmates can’t get past his extraordinary face. Wonder begins from Auggie’s point of view, but soon switches to include the perspectives of his classmates, his sister, her boyfriend, and others. These voices converge to portray a community as it struggles with differences, and challenges readers, both young and old, to wonder about the true nature of empathy, compassion, acceptance, friendship, and—ultimately—kindness. Auggie is a hero for the ages, one who proves that you can’t blend in when you were born to stand out.
No One Dies in Garden of Syn
By: Michael Seidelman
Synthia (Syn) Wade is a teenage girl who struggles with cystic fibrosis, an incurable life-threatening disease. One day she is pushed into a pond by an unseen figure and wakes up in a new world – a mysterious garden where illness and death don’t exist. Welcomed by the garden’s residents and now free of her symptoms, Syn decides to stay. But, before long, she realizes that this apparent utopia holds many dangers and dark secrets. Surrounding the garden is a fog that Syn is warned never to enter. She encounters bizarre creatures that defy reason. And always lurking in the shadows is a masked woman – a woman who may have a connection to the disappearance of Syn’s parents many years ago. A woman whom no one will speak of, but whom everyone fears. While No One Dies in the Garden of Syn, Syn will soon discover that some fates are worse than death.
You’ll Miss Me When I’m Gone
By: Rachel Lynn Solomon
Eighteen-year-old twins Adina and Tovah have little in common besides their ambitious nature. Viola prodigy Adina yearns to become a soloist—and to convince her music teacher he wants her the way she wants him. Overachiever Tovah awaits her acceptance to Johns Hopkins, the first step on her path toward med school and a career as a surgeon. But one thing could wreck their carefully planned futures: a genetic test for Huntington’s, a rare degenerative disease that slowly steals control of the body and mind. It’s turned their Israeli mother into a near stranger and fractured the sisters’ own bond in ways they’ll never admit. While Tovah finds comfort in their Jewish religion, Adina rebels against its rules. When the results come in, one twin tests negative for Huntington’s. The other tests positive. These opposite outcomes push them farther apart as they wrestle with guilt, betrayal, and the unexpected thrill of first love. How can they repair their relationship, and is it even worth saving? From debut author Rachel Lynn Solomon comes a luminous, heartbreaking tale of life, death, and the fragile bond between sisters.
By: Nancy Werlin
Eighteen year old Eli Samuels has just graduated from high school and lucked into a job at Wyatt Transgenics—offered to him by Dr. Quincy Wyatt, the legendary molecular biologist. The salary is substantial, the work is interesting, and Dr. Wyatt seems to be paying special attention to Eli. Is it too good to be true? Eli’s girlfriend doesn’t think so, but his father is vehemently against his taking the job and won’t explain why. Eli knows that there’s some connection between Dr. Wyatt and his parents—something too painful for his father to discuss. Something to do with his mother, who is now debilitated by Huntington’s disease. As Eli works at the lab, and spends time with Dr. Wyatt, he begins to uncover some disconcerting information—about himself. Suspenseful and eloquent, with a hair-raising conclusion, Double Helix explores identity, intimacy, and the complicated ethics of genetic engineering.
We are Giants
By: Amber Lee Dodd
Sydney thinks her mother Amy is the best mom in the world–even if she is a bit . . . different from other kids’ parents. As Amy explains it, when she was a girl she got to 48 inches tall and then stopped growing right there. It’s the perfect height, in Sydney’s opinion: big enough to reach the ice cream at the supermarket, but small enough to be special. Anyway, Sydney’s big sister Jade is always there to help out with the stuff on the highest shelves. And though Sydney’s dad died when she was only five, she’s never felt alone or that there isn’t enough love to go around. But when they are forced to move to another neighborhood, things get more difficult for their little family. Sydney and Jade have to get used to different routines, make a whole new set of friends, and deal with the bullies at their new school. And then there’s the whole business of growing up. But Sydney doesn’t want to grow up–not if it means getting taller than her mom.
The Boy We Made
By: Taylor Harris
One morning, Tophs, Taylor Harris’s round-cheeked, lively twenty-two-month-old, wakes up listless, only lifting his head to gulp down water. She rushes Tophs to the doctor, ignoring the part of herself, trained by years of therapy for generalized anxiety disorder, that tries to whisper that she’s overreacting. But at the hospital, her maternal instincts are confirmed: something is wrong with her boy, and Taylor’s life will never be the same. With every question the doctors answer about Tophs’s increasingly troubling symptoms, more arise, and Taylor dives into the search for a diagnosis. She spends countless hours trying to navigate health and education systems that can be hostile to Black mothers and children; at night she googles, prays, and interrogates her every action. Some days, her sweet, charismatic boy seems just fine; others, he struggles to answer simple questions. A long-awaited appointment with a geneticist ultimately reveals nothing about what’s causing Tophs’s drops in blood sugar, his processing delays–but it does reveal something unexpected about Taylor’s own health. What if her son’s challenges have saved her life? This Boy We Made is a stirring and radiantly written examination of the bond between mother and child, full of hard-won insights about fighting for and finding meaning when nothing goes as expected.
The Gene: An Intimate History
By: Siddharta Mukherjee
From the Pulitzer Prize-winning, bestselling author of The Emperor of All Maladies–a magnificent history of the gene and a response to the defining question of the future: What becomes of being human when we learn to “read” and “write” our own genetic information? Siddhartha Mukherjee has a written a biography of the gene as deft, brilliant, and illuminating as his extraordinarily successful biography of cancer. Weaving science, social history, and personal narrative to tell us the story of one of the most important conceptual breakthroughs of modern times, Mukherjee animates the quest to understand human heredity and its surprising influence on our lives, personalities, identities, fates, and choices. Throughout the narrative, the story of Mukherjee’s own family–with its tragic and bewildering history of mental illness–cuts like a bright, red line, reminding us of the many questions that hang over our ability to translate the science of genetics from the laboratory to the real world. In superb prose and with an instinct for the dramatic scene, he describes the centuries of research and experimentation–from Aristotle and Pythagoras to Mendel and Darwin, from Boveri and Morgan to Crick, Watson and Franklin, all the way through the revolutionary twenty-first century innovators who mapped the human genome.
Immortal Life of Henrietta Lacks
By: Rebecca Skloot
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Social Life of DNA
By: Alondra Nelson
In The Social Life of DNA, Alondra Nelson takes us on an unprecedented journey into how the double helix has wound its way into the heart of the most urgent contemporary social issues around race. For over a decade, Nelson has deeply studied this phenomenon. Artfully weaving together keenly observed interactions with root-seekers alongside illuminating historical details and revealing personal narrative, she shows that genetic genealogy is a new tool for addressing old and enduring issues. In The Social Life of DNA, she explains how these cutting-edge DNA-based techniques are being used in myriad ways, including grappling with the unfinished business of slavery: to foster reconciliation, to establish ties with African ancestral homelands, to rethink and sometimes alter citizenship, and to make legal claims for slavery reparations specifically based on ancestry. Nelson incisively shows that DNA is a portal to the past that yields insight for the present and future, shining a light on social traumas and historical injustices that still resonate today. Science can be a crucial ally to activism to spur social change and transform twenty-first-century racial politics. But Nelson warns her readers to be discerning: for the social repair we seek can’t be found in even the most sophisticated science. Engrossing and highly original, The Social Life of DNA is a must-read for anyone interested in race, science, history and how our reckoning with the past may help us to chart a more just course for tomorrow.
The Philadelphia Chromosome: A Genetic Mystery, A Lethal Cancer, and the Improbable Invention of a Lifesaving Treatment
By: Jessica Wapner
Philadelphia, 1959: A scientist scrutinizing a single human cell under a microscope detects a missing piece of DNA. That scientist, David Hungerford, had no way of knowing that he had stumbled upon the starting point of modern cancer research― the Philadelphia chromosome. It would take doctors and researchers around the world more than three decades to unravel the implications of this landmark discovery. In 1990, the Philadelphia chromosome was recognized as the sole cause of a deadly blood cancer, chronic myeloid leukemia, or CML. Cancer research would never be the same. Science journalist Jessica Wapner reconstructs more than forty years of crucial breakthroughs, clearly explains the science behind them, and pays tribute―with extensive original reporting, including more than thirty-five interviews―to the dozens of researchers, doctors, and patients with a direct role in this inspirational story. Their curiosity and determination would ultimately lead to a lifesaving treatment unlike anything before it. The Philadelphia Chromosome chronicles the remarkable change of fortune for the more than 70,000 people worldwide who are diagnosed with CML each year. It is a celebration of a rare triumph in the battle against cancer and a blueprint for future research, as doctors and scientists race to uncover and treat the genetic roots of a wide range of cancers.
By: Walter Isaacson
When Jennifer Doudna was in sixth grade, she came home one day to find that her dad had left a paperback titled The Double Helix on her bed. She put it aside, thinking it was one of those detective tales she loved. When she read it on a rainy Saturday, she discovered she was right, in a way. As she sped through the pages, she became enthralled by the intense drama behind the competition to discover the code of life. Even though her high school counselor told her girls didn’t become scientists, she decided she would.
Driven by a passion to understand how nature works and to turn discoveries into inventions, she would help to make what the book’s author, James Watson, told her was the most important biological advance since his codiscovery of the structure of DNA. She and her collaborators turned a curiosity of nature into an invention that will transform the human race: an easy-to-use tool that can edit DNA. Known as CRISPR, it opened a brave new world of medical miracles and moral questions.