- Email: [email protected]
Life with Chronic Illness: Social and Psychological Dimensions
1168
Book Reviews / Social Science & Medicine 50 (2000) 1167±1170
rather than a planned research program on human cloning. This is how many new medical ``breakthroughs'' occur; someone in need presents at the same time that some other line of research (in this story, in chimpanzees) appears promising, and everyone agrees to take a chance. Dolly the sheep was born as a result of such risk-taking. Readers might want to start (rather than end) with Kadrey's chapter, because it helps to set the rest of the book in context. Assuming that cloning will be done, and that an outright ban would be more harm than good, some authors suggest regulations that could limit harm. Legal ethicist John Robertson argues from a rightsbased, procreative liberty approach, using hypothetical cases, that a ban on all human cloning is overly broad. However, he would require that the person(s) who initiate cloning also be personally responsible for rearing the resulting child. This would prevent the mass-production of little Hitlers seen in The Boys from Brazil, and would limit the use of cloning. Editor McGee, in a chapter authored with Dolly's creator, Ian Wilmut, proposes regulations based on the ``adoption model'', with special agency investigations of prospective clonees as biological and social parents and special court orders allowing cloning in a few extraordinary cases. Although this is an interesting idea, the authors do not establish why cloning should be singled out from other new reproductive technologies (NRTs). Why not apply the adoption model to sperm donation, egg donation, surrogacy, and perhaps also pre-implantation diagnosis
and even IVF? The obvious answer is that the other methods are here to stay, while cloning is futural. It could well be argued that the ethical bases of all NRT's need to be re-examined, but this is politically unlikely and would be seen by many as an infringement on liberty. In order to make a convincing case for their adoption model, McGee and Wilmut would need to prove that adoption agencies and government regulations really prevent harm to children and families. All too often, these agencies have allowed children to grow up in institutions or foster families while potential adoptive families wait. Finally, a few authors take the refreshing perspective that the cloning debate isn't so important in the wider view of things. Philosopher Philip Kitcher argues that (p. 123) ``Those who think that working out the proper limits of cloning is the big issue are suering from moral myopia. General moral principles provide us with an obligation to improve the quality of human lives . . . . If we took the principles seriously, we would be led to demand a serious investment in programs to improve the lives of the young, the disabled, and the socially disadvantaged. That is not quite what is going on in the ``civilized'' world''. Overall, a ®ne book.
Dorothy C. Wertz Social Science, Ethics, and Law, The Shriver Center for Mental Retardation, Inc., Waltham, MA 02452, USA
0277-9536/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 9 9 ) 0 0 3 7 4 - 3
Life with Chronic Illness: Social and Psychological Dimensions Ariela Royer. Praeger, Westport, CT, London, 1998, 232pp., $55.00 (cloth).
Although many books and articles are written about chronic illness and disability, there remains an urgent need for new approaches. Pope and Tarlov (1991) wrote: ``disability prevention requires a change in the perspective of physicians and other health care providers to broaden modern medicine's cure-oriented emphasis on acute illness'' (p. 245). Ariela Royer, assistant professor of sociology at Indiana University, South Bend, has written a very useful contribution to that end. Her study is widely documented and the book is strongly structured. Yet, she succeeds in conveying the simple and ongoing feeling that life is
indeed her one concern. This is why this piece of research could and should be recommended not only to all health care providers, but also to the people who live with a chronic illness, and to their families. Royer's data show that ``few people seem to be interested in personalized, prolonged contact with the chronically ill'' (p. 87), and that ``it seems that `nobody wants to listen', particularly those in the health care sector'' (p. 70). Therefore, ``health care professionals, with some notable exceptions fail to deal with the social and psychological factors related to living with long term illness'' (p. 146). Royer was interested, listened, and dealt with the social and psychological factors, in order to ``give us the whole picture of everyday existence in the life of a chronically ill person'' (p. xii). This is no one-sided endeavour. On the contrary, the climax of the book is the study of both sides of the ``crucial dilemma for chronically ill persons'' (pp. 145±
Book Reviews / Social Science & Medicine 50 (2000) 1167±1170
155). Royer begins with the description of normalization as opposed to simple adaptation: ``because of the variable trajectory of a chronic illness, situational adjustment is an ongoing and emergent process, because in contrast to Parson's sick role formulation, chronically ill individuals feel that they must,or are encouraged and sometimes even coerced to,maintain normal activities and involvement'' (p. 98). Then, she moves on to explaining how ``normalization versus adaptation has evolved as a conceptualization of a strategic dilemma'' (p. 150). Day after day, these patients have to include both illness and normality in their lives. This explains why ``professionals (physicians, nurses) frequently appear to have treatment goals that are at odds with those of chronically ill patients, since due to their training, they usually de®ne illness only or primarily in terms of physiological deviation from normal . . . with little concern for broader aspects of ill people's lives'' (p. 146). Although the ®rst and the last chapters especially relate to the US, and although this research took place in the States, this book can be of interest to the inter-
1169
national audience of scientists. However, Royer's research is more than a valuable contribution to science. It is another piece of evidence showing that the everyday life of chronically ill people can be a focus of interest for everybody. Thanks to an improved understanding of their situations, this will help all of us change our attitudes and implement appropriate actions. References Pope, A., Tarlov, A. (Eds.), 1991. Disability in America: Towards a National Agenda for Prevention. National Academy Press, Washington, D.C.
Chapireau Franc° ois Hopital Erasme, 143 avenue Armand Guillebaud, B.P. 85, 92160, Antony, France
0277-9536/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 9 9 ) 0 0 3 7 2 - X
Human Biology and Social Inequality: 39th Symposium Volume of the Society for the Study of Human Biology: Simon Strickland and Prakash Shetty, Cambridge University Press, Cambridge, 1998. 346pp., $74.95 (cloth) This symposium volume brings together contributions by 24 scholars with backgrounds in anthropology, human biology, public health, epidemiology, social medicine, and other disciplines to address the theme of human biology and social inequality. The studies set out explicitly to investigate the relationships between biological and social variation in human groups and, in particular, to address the question of how social strati®cation mediates processes of natural selection. The scope of the volume is wide and includes population studies in developing and industrial and post-industrial countries, studies of the contemporary world and historical and archaeological perspectives, and data on a wide range of heritable biological markers. The value and interest of this collection lies in its unifying theme. The editors commence the volume by tracing in the history of European thought the ideas of the separateness of the biological from the social domains of enquiry, the descriptive and impartial ver-
sus evaluative senses of the term `inequality', the concept of natural human inequality, and the distinction between facts and values. They go on to show how these ideas are represented in the individual contributions. The integrated framework around these ideas, the maintenance in the individual studies of a clear link with the central theme, and useful cross-referencing throughout the volume makes the bringing together of these studies a successful endeavour and rewarding for the reader. The individual contributions in this volume are characterised by the challenging questions raised and the meticulous and incisive use of evidence to address them; clearly, a short review cannot do justice to them all. On the theme of the degree of congruence between measurable biological and socio±economic properties of human populations, Macintyre provides a comparative overview of social inequalities and health. She presents evidence that social inequalities in health are a ubiquitous feature of industrial societies; that the relationships of health and longevity to socio±economic status follow a stepwise gradient, not a threshold pattern, regardless of the measure of inequality applied; and that socio±economic dierentials in mortality within countries have increased over recent decades, despite declines in overall mortality. Socio±economic
Book Reviews / Social Science & Medicine 50 (2000) 1167±1170
rather than a planned research program on human cloning. This is how many new medical ``breakthroughs'' occur; someone in need presents at the same time that some other line of research (in this story, in chimpanzees) appears promising, and everyone agrees to take a chance. Dolly the sheep was born as a result of such risk-taking. Readers might want to start (rather than end) with Kadrey's chapter, because it helps to set the rest of the book in context. Assuming that cloning will be done, and that an outright ban would be more harm than good, some authors suggest regulations that could limit harm. Legal ethicist John Robertson argues from a rightsbased, procreative liberty approach, using hypothetical cases, that a ban on all human cloning is overly broad. However, he would require that the person(s) who initiate cloning also be personally responsible for rearing the resulting child. This would prevent the mass-production of little Hitlers seen in The Boys from Brazil, and would limit the use of cloning. Editor McGee, in a chapter authored with Dolly's creator, Ian Wilmut, proposes regulations based on the ``adoption model'', with special agency investigations of prospective clonees as biological and social parents and special court orders allowing cloning in a few extraordinary cases. Although this is an interesting idea, the authors do not establish why cloning should be singled out from other new reproductive technologies (NRTs). Why not apply the adoption model to sperm donation, egg donation, surrogacy, and perhaps also pre-implantation diagnosis
and even IVF? The obvious answer is that the other methods are here to stay, while cloning is futural. It could well be argued that the ethical bases of all NRT's need to be re-examined, but this is politically unlikely and would be seen by many as an infringement on liberty. In order to make a convincing case for their adoption model, McGee and Wilmut would need to prove that adoption agencies and government regulations really prevent harm to children and families. All too often, these agencies have allowed children to grow up in institutions or foster families while potential adoptive families wait. Finally, a few authors take the refreshing perspective that the cloning debate isn't so important in the wider view of things. Philosopher Philip Kitcher argues that (p. 123) ``Those who think that working out the proper limits of cloning is the big issue are suering from moral myopia. General moral principles provide us with an obligation to improve the quality of human lives . . . . If we took the principles seriously, we would be led to demand a serious investment in programs to improve the lives of the young, the disabled, and the socially disadvantaged. That is not quite what is going on in the ``civilized'' world''. Overall, a ®ne book.
Dorothy C. Wertz Social Science, Ethics, and Law, The Shriver Center for Mental Retardation, Inc., Waltham, MA 02452, USA
0277-9536/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 9 9 ) 0 0 3 7 4 - 3
Life with Chronic Illness: Social and Psychological Dimensions Ariela Royer. Praeger, Westport, CT, London, 1998, 232pp., $55.00 (cloth).
Although many books and articles are written about chronic illness and disability, there remains an urgent need for new approaches. Pope and Tarlov (1991) wrote: ``disability prevention requires a change in the perspective of physicians and other health care providers to broaden modern medicine's cure-oriented emphasis on acute illness'' (p. 245). Ariela Royer, assistant professor of sociology at Indiana University, South Bend, has written a very useful contribution to that end. Her study is widely documented and the book is strongly structured. Yet, she succeeds in conveying the simple and ongoing feeling that life is
indeed her one concern. This is why this piece of research could and should be recommended not only to all health care providers, but also to the people who live with a chronic illness, and to their families. Royer's data show that ``few people seem to be interested in personalized, prolonged contact with the chronically ill'' (p. 87), and that ``it seems that `nobody wants to listen', particularly those in the health care sector'' (p. 70). Therefore, ``health care professionals, with some notable exceptions fail to deal with the social and psychological factors related to living with long term illness'' (p. 146). Royer was interested, listened, and dealt with the social and psychological factors, in order to ``give us the whole picture of everyday existence in the life of a chronically ill person'' (p. xii). This is no one-sided endeavour. On the contrary, the climax of the book is the study of both sides of the ``crucial dilemma for chronically ill persons'' (pp. 145±
Book Reviews / Social Science & Medicine 50 (2000) 1167±1170
155). Royer begins with the description of normalization as opposed to simple adaptation: ``because of the variable trajectory of a chronic illness, situational adjustment is an ongoing and emergent process, because in contrast to Parson's sick role formulation, chronically ill individuals feel that they must,or are encouraged and sometimes even coerced to,maintain normal activities and involvement'' (p. 98). Then, she moves on to explaining how ``normalization versus adaptation has evolved as a conceptualization of a strategic dilemma'' (p. 150). Day after day, these patients have to include both illness and normality in their lives. This explains why ``professionals (physicians, nurses) frequently appear to have treatment goals that are at odds with those of chronically ill patients, since due to their training, they usually de®ne illness only or primarily in terms of physiological deviation from normal . . . with little concern for broader aspects of ill people's lives'' (p. 146). Although the ®rst and the last chapters especially relate to the US, and although this research took place in the States, this book can be of interest to the inter-
1169
national audience of scientists. However, Royer's research is more than a valuable contribution to science. It is another piece of evidence showing that the everyday life of chronically ill people can be a focus of interest for everybody. Thanks to an improved understanding of their situations, this will help all of us change our attitudes and implement appropriate actions. References Pope, A., Tarlov, A. (Eds.), 1991. Disability in America: Towards a National Agenda for Prevention. National Academy Press, Washington, D.C.
Chapireau Franc° ois Hopital Erasme, 143 avenue Armand Guillebaud, B.P. 85, 92160, Antony, France
0277-9536/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 9 9 ) 0 0 3 7 2 - X
Human Biology and Social Inequality: 39th Symposium Volume of the Society for the Study of Human Biology: Simon Strickland and Prakash Shetty, Cambridge University Press, Cambridge, 1998. 346pp., $74.95 (cloth) This symposium volume brings together contributions by 24 scholars with backgrounds in anthropology, human biology, public health, epidemiology, social medicine, and other disciplines to address the theme of human biology and social inequality. The studies set out explicitly to investigate the relationships between biological and social variation in human groups and, in particular, to address the question of how social strati®cation mediates processes of natural selection. The scope of the volume is wide and includes population studies in developing and industrial and post-industrial countries, studies of the contemporary world and historical and archaeological perspectives, and data on a wide range of heritable biological markers. The value and interest of this collection lies in its unifying theme. The editors commence the volume by tracing in the history of European thought the ideas of the separateness of the biological from the social domains of enquiry, the descriptive and impartial ver-
sus evaluative senses of the term `inequality', the concept of natural human inequality, and the distinction between facts and values. They go on to show how these ideas are represented in the individual contributions. The integrated framework around these ideas, the maintenance in the individual studies of a clear link with the central theme, and useful cross-referencing throughout the volume makes the bringing together of these studies a successful endeavour and rewarding for the reader. The individual contributions in this volume are characterised by the challenging questions raised and the meticulous and incisive use of evidence to address them; clearly, a short review cannot do justice to them all. On the theme of the degree of congruence between measurable biological and socio±economic properties of human populations, Macintyre provides a comparative overview of social inequalities and health. She presents evidence that social inequalities in health are a ubiquitous feature of industrial societies; that the relationships of health and longevity to socio±economic status follow a stepwise gradient, not a threshold pattern, regardless of the measure of inequality applied; and that socio±economic dierentials in mortality within countries have increased over recent decades, despite declines in overall mortality. Socio±economic