Few concepts played a more important role in twentieth-century life sciences than that of the gene. Yet at this moment, the field of genetics is undergoing radical conceptual transformation, and some scientists are questioning the very usefulness of the concept of the gene, arguing instead for more systemic perspectives. The time could not be better, therefore, for Hans-Jörg Rheinberger and Staffan Müller-Wille's magisterial history of the concept of the gene. Though the gene has long been the central organizing theme of biology, both conceptually and as an object of study, Rheinberger and Müller-Wille conclude that we have never even had a universally accepted, stable definition of it. Rather, the concept has been in continual flux—a state that, they contend, is typical of historically important and productive scientific concepts. It is that very openness to change and manipulation, the authors argue, that made it so useful: its very mutability enabled it to be useful while the technologies and approaches used to study and theorize about it changed dramatically.

“A compelling collection of essays that address the experiences of many who have genetically based illnesses.” —Library Journal The contributors to The Story Within share powerful experiences of living with genetic disorders. Their stories illustrate the complexities involved in making decisions about genetic diseases: whether to be tested, who to tell, whether to have children, and whether and how to treat children medically, if treatment is available. More broadly, they consider how genetic information shapes the ways we see ourselves, the world, and our actions within it. People affected by genetic disease respond to such choices in varied ways. These writers reflect that breadth of response, yet they share the desire to challenge a restricted sense of what “health” is or whose life has value. They write hoping to expand conversations about genetics and identity—to deepen debate and generate questions. They or their families are affected by Huntington’s disease, Alzheimer’s disease, cancer, genetic deafness or blindness, schizophrenia, cystic fibrosis, Tay-Sachs, hypertrophic cardiomyopathy, fragile X, or Fanconi anemia. All of their stories remind us that genetic health is complicated, dynamic, and above all, deeply personal. Contributors include: Misha Angrist, Amy Boesky, Kelly Cupo, Michael Downing, Clare Dunsford, Mara Faulkner, Christine Kehl O’Hagan, Charlie Pierce, Kate Preskenis, Emily Rapp, Jennifer Rosner, Joanna Rudnick, Anabel Stenzel, Isabel Stenzel Byrnes, Laurie Strongin, Patrick Tracey, Alice Wexler

This gripping story of the doctors at the forefront of Alzheimer’s research and the courageous North Dakota family whose rare genetic code is helping to understand our most feared diseases is “excellent, accessible...A science text that reads like a mystery and treats its subjects with humanity and sympathy” (Library Journal, starred review). Every sixty-nine seconds, someone is diagnosed with Alzheimer’s disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can. The DeMoe family has the most devastating form of the disease that there is: early onset Alzheimer’s, an inherited genetic mutation that causes the disease in one hundred percent of cases, and has a fifty percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, daughter Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer’s research and offers the brightest hope for future treatments—and possibly a cure. Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. “A compelling narrative…and an educational and emotional chronicle” (Kirkus Reviews, starred review), their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this inspiring race against time redefines courage in the face of this most pervasive and mysterious disease.

"Early-onset Alzheimer's disease caused by a rare genetic mutation struck 5 of Kate's family members, beginning with her grandmother at age 39 .... Through the crystal ball of genetics, Kate can find out her future, but does she want to know?" -- P. [4] of cover.