A thorough report, carefully researched and well-documented, aimed at both general readers and policymakers.

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OUR BODIES, OUR DATA

HOW COMPANIES MAKE BILLIONS SELLING OUR MEDICAL RECORDS

A disturbing look at the threat to privacy created by the lucrative and growing health care data-mining industry.

In his previous book, What Stays in Vegas: The World of Personal Data—Lifeblood of Big Business—and the End of Privacy as We Know It (2014), Tanner, a writer in residence at Harvard University’s Institute for Quantitative Social Science, took a broad look at the enterprises that gather and sell computer-generated data on consumers. Here, he zeroes in on the trade in patient medical information, discovering that an industry dealing in intimate personal information is very closemouthed about its own inner workings. Tanner is a persistent and experienced researcher, however, and the information he gleans paints an alarming picture. As doctors and hospitals adopt electronic health records, companies operating these systems sell the information to data-mining enterprises, who in turn are making big money marketing the data on millions of patients to insurers, makers of medical devices, drug manufacturers, physicians, and attorneys. Although the patient’s identity is removed from a record, enough information is retained that can reidentify the person. Through his own personal experience in changing health insurance plans, Tanner reveals how patients have little say in how their data will be shared. He asserts that our health care system has failed to provide easy access to comprehensive medical records by doctors, who need it for treatment of their patients, and he rebuts the claim by data miners that the information they gather advances science by providing valuable information to medical researchers. Finally, he takes a stab at reforming the system, a task that first requires that patients know that this threat to their privacy exists and how it affects them, information that Tanner provides in detail.

A thorough report, carefully researched and well-documented, aimed at both general readers and policymakers.

Pub Date: Jan. 10, 2017

ISBN: 978-0-8070-3334-0

Page Count: 248

Publisher: Beacon

Review Posted Online: Oct. 11, 2016

Kirkus Reviews Issue: Nov. 1, 2016

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Skloot's meticulous, riveting account strikes a humanistic balance between sociological history, venerable portraiture and...

THE IMMORTAL LIFE OF HENRIETTA LACKS

A dense, absorbing investigation into the medical community's exploitation of a dying woman and her family's struggle to salvage truth and dignity decades later.

In a well-paced, vibrant narrative, Popular Science contributor and Culture Dish blogger Skloot (Creative Writing/Univ. of Memphis) demonstrates that for every human cell put under a microscope, a complex life story is inexorably attached, to which doctors, researchers and laboratories have often been woefully insensitive and unaccountable. In 1951, Henrietta Lacks, an African-American mother of five, was diagnosed with what proved to be a fatal form of cervical cancer. At Johns Hopkins, the doctors harvested cells from her cervix without her permission and distributed them to labs around the globe, where they were multiplied and used for a diverse array of treatments. Known as HeLa cells, they became one of the world's most ubiquitous sources for medical research of everything from hormones, steroids and vitamins to gene mapping, in vitro fertilization, even the polio vaccine—all without the knowledge, must less consent, of the Lacks family. Skloot spent a decade interviewing every relative of Lacks she could find, excavating difficult memories and long-simmering outrage that had lay dormant since their loved one's sorrowful demise. Equal parts intimate biography and brutal clinical reportage, Skloot's graceful narrative adeptly navigates the wrenching Lack family recollections and the sobering, overarching realities of poverty and pre–civil-rights racism. The author's style is matched by a methodical scientific rigor and manifest expertise in the field.

Skloot's meticulous, riveting account strikes a humanistic balance between sociological history, venerable portraiture and Petri dish politics.

Pub Date: Feb. 9, 2010

ISBN: 978-1-4000-5217-2

Page Count: 320

Publisher: Crown

Review Posted Online: Dec. 22, 2010

Kirkus Reviews Issue: Jan. 1, 2010

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An absorbing, wide-ranging story of humans’ relationship with the water.

WHY WE SWIM

A study of swimming as sport, survival method, basis for community, and route to physical and mental well-being.

For Bay Area writer Tsui (American Chinatown: A People's History of Five Neighborhoods, 2009), swimming is in her blood. As she recounts, her parents met in a Hong Kong swimming pool, and she often visited the beach as a child and competed on a swim team in high school. Midway through the engaging narrative, the author explains how she rejoined the team at age 40, just as her 6-year-old was signing up for the first time. Chronicling her interviews with scientists and swimmers alike, Tsui notes the many health benefits of swimming, some of which are mental. Swimmers often achieve the “flow” state and get their best ideas while in the water. Her travels took her from the California coast, where she dove for abalone and swam from Alcatraz back to San Francisco, to Tokyo, where she heard about the “samurai swimming” martial arts tradition. In Iceland, she met Guðlaugur Friðþórsson, a local celebrity who, in 1984, survived six hours in a winter sea after his fishing vessel capsized, earning him the nickname “the human seal.” Although humans are generally adapted to life on land, the author discovered that some have extra advantages in the water. The Bajau people of Indonesia, for instance, can do 10-minute free dives while hunting because their spleens are 50% larger than average. For most, though, it’s simply a matter of practice. Tsui discussed swimming with Dara Torres, who became the oldest Olympic swimmer at age 41, and swam with Kim Chambers, one of the few people to complete the daunting Oceans Seven marathon swim challenge. Drawing on personal experience, history, biology, and social science, the author conveys the appeal of “an unflinching giving-over to an element” and makes a convincing case for broader access to swimming education (372,000 people still drown annually).

An absorbing, wide-ranging story of humans’ relationship with the water.

Pub Date: April 14, 2020

ISBN: 978-1-61620-786-1

Page Count: 288

Publisher: Algonquin

Review Posted Online: Jan. 5, 2020

Kirkus Reviews Issue: Feb. 1, 2020

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