reared in foster homes and orphan- ages and a mother with a ... Eric Lenneberg. He also includes de- ... again Genie was placed in a foster home. Sadly, she ...
BOOKS * LIVRES
Lesson in research ethics Genie: an Abused Child's Flight from Silence. Russ Rymer. 221 pp. HarperCollins Publishers, Inc., New York. 1993. $26.75. ISBN 0-06016910-9 T n he author, an investigative journalist, superbly demonstrates great literary skill in following the internecine warfare among the various players in this human tragedy. Genie chronicles the abuse, neglect and deprivation inflicted on a young girl by a psychotic father reared in foster homes and orphanages and a mother with a very poor self-image. The father confined her to a small bedroom, harnessed her to an infant's potty seat continuously in the day and confined her to a sleeping bag at night. Genie was apprehended by chance in 1970 when the mother was seeking help for her own near-blindness. This incontinent 13-year-old child (the size of a 6- or 7-year-old) was unable to chew, spat indiscriminately, was unable to extend her limbs and masturbated continually. She was admitted to hospital for extreme malnutrition. Like the "wild-boy" stereotype, she became a prize to whomever could investigate, research and treat her. To the scientist, Genie's virtual absence of verbal communication was of paramount interest. The battle of nature versus nurture began. Professionals from several disciplines met to prepare an appropriate grant proposal to use Genie as a living experiment. Warnings were given that if love, affection and acceptance appeared to be dependent on speech, the outcome of the experiment would be compromised. Neverthev- For prescribing information see page 431
less, the grant decision gave its primary focus to Genie's language acquisition. The author has meticulously researched all the views relating to the "original language of the world" and outlines this research in the book. He provides meaningful vignettes in the Psamtik language (used in the 7th century BC) to linguist Noam Chomsky and neuropsychologist Eric Lenneberg. He also includes descriptions of language acquisition theories from linguists, pediatricians, psychologists, experts in child abuse, experts involved in blind and deaf education, neurologists and neuroscientists. Genie was cared for by an excellent teacher from the hospital school. This setting, however, was not acceptable to the scientists. Genie then went to live "temporarily" with a psychologist and his family but stayed for 4 years. When the research grant came to an end she was sent to foster homes and, after further rejection by foster parents, back to her mother. The mother could not handle the child's difficulties, and again Genie was placed in a foster home. Sadly, she regressed and at the age of 27 appears to be a "chronically institutionalized person." In the so-called research conducted on Genie, the child's every word and action were analysed. Reams of data were collected and processed. The sheer volume of information prevented its utilization. Language ought to have been seen as another activity in the growth and development of the child, related to a sense of security and safety and based on an absolute conviction of the worth of the person. Again, Genie's environmental opportunities to learn language should have been in the context of an interactive situation, aided by
professional knowledge of such areas as critical periods in the development of the brain, neurons and dendrites and the effect of hormones and enzymes and how these impinge on life and living. The course of the research defeated the treatment, which in turn defeated the research. Is the content of the book accurate? One would think so. Would I recommend this book to patients? Probably not, because it would reinforce the often poor opinion many people have of doctors and other scientists. To whom would I recommend this book? I think it should be required reading for university students entering disciplines dealing with people, especially medicine, social sciences, linguistics and social work. Maybe those who award grants should also read it. Genie leaves the reader with some questions. Who guards the guardians of children in need? Who defines who the experts are, and should we beware of them? For whose benefit are grants given? Joseph Jacobs, MD, FRCPC Emeritus professor of pediatrics McMaster University Hamilton, Ont.
Good introduction to complex topic Making Medicine, Making Money. Donald Drake and Marian Uhlman. 120 pp. Illust. Andrews and McMeel, a Universal Press Syndicate Company, Kansas City, Mo. 1993. $7.95. ISBN 0-8362-8023-7 C
ompanies that research, manufacture and market drugs are concerned with (a) mak-
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ing a buck or (b) bettering the health of humanity. This short book, by two reporters from the Philadelphia Inquirer, leans toward the first position. The authors marshall an impressive array of facts and figures to investigate what is a fair price for a drug and who should determine that price. The book is oriented to a US audience, so most of the information is specific to that country, although it makes provocative reading for anyone interested in the pharmaceutical industry. Between 1985 and 1991 drug prices in the United States rose by 66%, more than double the price increase for other goods. In the 12 months ending in November 1992 the price increase for drugs was 6.6%, six times that for all manufactured goods. Price increases like these are becoming increasingly untenable south of the border; Americans routinely pay more for their drugs than anyone else in the world. In the book's last chapter the authors describe how other countries, including Canada, have coped with rising drug prices. The United States has done nothing about drug prices in part because of lobbying by the pharmaceutical industry. Canadians got a glimpse of how much money the industry spends on lobbying during the recent debate over Bill C-91, which extended the patent on drugs. However, the amount pales in comparison with that in the United States. The US Pharmaceutical Manufacturers Association spends $3 1 million a year presenting its case to politicians; between 1988 and 1991 it gave $8 million in donations to key senators and members of Congress. As a result, legislation unfavourable to the industry rarely gets passed. Other chapters explore the reasons for high drug prices. The authors devote one chapter to explaining how the US pharmaceutical industry woos doctors, spending 22.5% of its sales dollar ($10 billion 386
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a year) on them, as compared with just over $7 billion on research and development. Three billion dollars goes to the salaries and expenses of 40 000 sales representatives. In some respects, events have overtaken this book. Companies in the United States are coming under increasing political pressure as nervous executives wait for President Clinton's health care reforms. Stock prices for Merck and Bristol-Myers Squibb, for example, fell by 15% in the first half of 1993. As well, 10 000 job cuts have been announced. Although events race ahead the book gives a good introduction to this complex topic. Joel Lexchin, MD Toronto. Ont.
Close encounters are life giving A Child Shall Lead Them: Lessons About Hope from Children with Cancer. Diane M. Komp. 176 pp. Zondervan Publishing House (division of HarperCollins Publishers), Grand Rapids, Mich. 1993. $15.99, hardcover; $15.99, audiocassettes (two 60-minute tapes). ISBN 0-310-37980-6, hardcover; 0-31061488-0, audiocassettes D
r.
Diane M. Komp, profes-
sor of pediatric oncology at Yale University, New Haven, Conn., draws from her vast experience to show what her patients have taught her about living with un-
certainty and hope. Her previous book, A Window to Heaven (Zondervan, Grand Rapids, Mich., 1992), told how the spiritual experiences of her patients renewed her Christian faith. Although that theme persists in this book the main theme is how her little patients' love, laughter and hope have inspired her. The book is not about science and technology, although they are in the background. Komp writes in an
easily readable, humourous, poetic and sometimes spiritual style. Each chapter has an introductory dialogue with her favourite patient, CrumbBunny, a vivacious little girl who was saved from almost certain death by a much-publicized bone marrow transplant. In the early chapters Komp describes her gradual, reluctant entrance into pediatrics and oncology, which should inspire anyone involved in or contemplating these fields. She endorses and exemplifies close emotional contact with patients and families: --It is only when we share the feelings of another that we understand the importance of hope. Without hope we cannot live. Without hope we are already dead." To her amazement the closer Komp got to her patients the easier the job was, and instead of sapping her energy the children were life giving. She emphasizes how physicians and other health care providers can learn from the experiences of parents as well. Chapter 4 mentions the increasing number of long-term survivors (1 in 1000 young adults) who, against all odds, have had hope and prayer rewarded. Komp is not embarrassed to be known as the "grandmother" of these patients. Chapters 5 and 6 illustrate the unconditional love of small children (how their openness and naivete contrast so strongly with the adult world) and compares the current legal concept of a contract with the historical, biblical concept of a covenant in dealing with patients and families. Chapter 10 discusses our irrational fear of the word "cancer" and of oncology as a profession, and chapter 11 discusses the role of healing and prayer in medical treatment and how Komp has developed this relationship. Chapter 12 is a wonderful insight into the inner beauty of cancer patients, despite their physical deformities and problems. Chapter 13 discusses the psychosocial pain parents suffer, LE
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