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BOOK REVIEWS 211 logical studies using linkage techniques, carried out between 1965 and 1983. The bulk of the volume is thus a useful compilation of ‘Record Linkage Greatest Hits’: as the disc collector replaces old ‘45’ singles with the album, similarly those with literature libraries can now replace their dog-eared photocopies of the originals with this book. That this is not the comprehensive textbook that I think is needed should not detract from the merits of the publication. The bringing together of so many studies in one volume, and the addition of the excellent original contribution from Michael Goldacre on health service management issues, provide a showcase for what can be done by using linkage techniques. The book also serves as a fitting tribute to the work of one of the pioneers of ORLS, Dr. John Baldwin. For these reasons it will be of interest to a wide readership and can be recommended. We still await, however, the distilled wisdom of 25 years of ORLS experience in capturing, collating and processing data and providing information about patients. What advice have they to give for example to the British NHS struggling with developing new patient information systems geared to abstracting and coding, maintaining data quality, confidentiality, training staff, or extracting and presenting information? Not to incorporate such thinking into current developments both in Britain and internationally would be a missed opportunity and a waste of the considerable national investment made in ORLS over the years. ALASTAIR MASON Arthur Andersen & Co., Management Consultants, London (formerly Secretary, DHSS-NHS Steering Group on Health Services Information-the Korner Committee) ELENA 0. NIGHTINGALE and SUSAN B. MEISTER, Prenatal Screening, Policies, and Values: The Example of Neural Tube Defects, Cambridge, MA & London: Division of Health Policy Research and Education, Harvard University Press, 1987, 93pp. Price (UK) 28.75. Health care is entering an era of clinical genetics in which identification of increasing numbers of genetic disorders and alteration of the course of pregnancy is possible. It will be possible to isolate any human gene by recombinant DNA techniques having obtained fetal tissue by chorionic villus sampling in the first trimester of pregnancy. Populations of pregnant women could be screened; and, although so far in-utero treatment is limited, parents can be given the choice of termination of an affected fetus or preparation for support and services to lessen the handicaps of a disabled offspring. At the same time, the advance of neonatal care allows babies of more immature development to survive, and informed decisions by parents early in pregnancy become more critical. In the American setting, Nightingale and Meister recognize the need for health professionals to aid health policy formulation, in order that knowledge and reseurces contribute to society’s goals and values. Health policies for clinical genetics involving screening do need to recognize all interests in order that individuals have the opportunity to exercise their own power in a manner which is acceptable also to the society in which they live. The authors suggest that the values of American society concerning health care are made explicit through the work of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research (1983). These values are: well-being-promotion of health and welfare of people through health care and avoidance of harm; autonomy-freedom of choice through informed decisions taken in private; and, equity-meaning equal treatment opportunities tempered by fairness for those with greater health needs. The authors, with multidisciplinary advice, have taken three analytical methods- technology assessment, decision analysis and cost-effectiveness analysis-and then

Elena O. Nightingale and Susan B. Meister, Prenatal Screening, Policies, and Values: The Example of Neural Tube Defects, Cambridge, MA & London: Division of Health Policy Research

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BOOK REVIEWS 211

logical studies using linkage techniques, carried out between 1965 and 1983. The bulk of the volume is thus a useful compilation of ‘Record Linkage Greatest Hits’: as the disc collector replaces old ‘45’ singles with the album, similarly those with literature libraries can now replace their dog-eared photocopies of the originals with this book.

That this is not the comprehensive textbook that I think is needed should not detract from the merits of the publication. The bringing together of so many studies in one volume, and the addition of the excellent original contribution from Michael Goldacre on health service management issues, provide a showcase for what can be done by using linkage techniques. The book also serves as a fitting tribute to the work of one of the pioneers of ORLS, Dr. John Baldwin. For these reasons it will be of interest to a wide readership and can be recommended.

We still await, however, the distilled wisdom of 25 years of ORLS experience in capturing, collating and processing data and providing information about patients. What advice have they to give for example to the British NHS struggling with developing new patient information systems geared to abstracting and coding, maintaining data quality, confidentiality, training staff, or extracting and presenting information? Not to incorporate such thinking into current developments both in Britain and internationally would be a missed opportunity and a waste of the considerable national investment made in ORLS over the years.

ALASTAIR MASON Arthur Andersen & Co., Management Consultants, London

(formerly Secretary, DHSS-NHS Steering Group on Health Services Information-the Korner Committee)

ELENA 0. NIGHTINGALE and SUSAN B. MEISTER, Prenatal Screening, Policies, and Values: The Example of Neural Tube Defects, Cambridge, MA & London: Division of Health Policy Research and Education, Harvard University Press, 1987, 93pp. Price (UK) 28.75.

Health care is entering an era of clinical genetics in which identification of increasing numbers of genetic disorders and alteration of the course of pregnancy is possible. It will be possible to isolate any human gene by recombinant DNA techniques having obtained fetal tissue by chorionic villus sampling in the first trimester of pregnancy. Populations of pregnant women could be screened; and, although so far in-utero treatment is limited, parents can be given the choice of termination of an affected fetus or preparation for support and services to lessen the handicaps of a disabled offspring. At the same time, the advance of neonatal care allows babies of more immature development to survive, and informed decisions by parents early in pregnancy become more critical.

In the American setting, Nightingale and Meister recognize the need for health professionals to aid health policy formulation, in order that knowledge and reseurces contribute to society’s goals and values. Health policies for clinical genetics involving screening do need to recognize all interests in order that individuals have the opportunity to exercise their own power in a manner which is acceptable also to the society in which they live. The authors suggest that the values of American society concerning health care are made explicit through the work of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research (1983). These values are: well-being-promotion of health and welfare of people through health care and avoidance of harm; autonomy-freedom of choice through informed decisions taken in private; and, equity-meaning equal treatment opportunities tempered by fairness for those with greater health needs.

The authors, with multidisciplinary advice, have taken three analytical methods- technology assessment, decision analysis and cost-effectiveness analysis-and then

212 BOOK REVIEWS

studied the attention given to the diagnosis of, and response of, neural tube defect (NTD) in world (mainly American) literature. Their investigation determines how far these methods aid health policy regarding NTD.

Technology assessment is concerned with diagnosis at three levels-serum alpha- feto protein estimation, ultrasound inspection and amniocentesis, none of which define potential disability-and the efficacy, effectiveness and safety of screening methods. The literature records high specificity of diagnosis but also gaps in knowledge, especially for the effect on women who do not follow the screening programme. Authors observe also that little attention is given to psychological effects in the literature.

Decision analysis deals with choices when knowledge is incomplete and uncertain- ties exist. Probabilities of outcome are combined with assumed or known values used in decision-taking. The validity of the approach depends on the state of knowledge and the assumptions made.

Cost-effectiveness analysis is concerned with efficient use of resources for the population. Two populations are recognized in the case under consideration-those who choose to abort and those who do not. For women who choose to abort, the cost of diagnosing spina bifida is likely to be exceeded by savings in services to a surviving affected baby. For women who do not abort, valuation of costs of screening programmes will depend on future estimates of benefits gained from supporting services through the earlier knowledge of expected disability in the baby.

The authors conclude that the three methods do not provide a comprehensive basis for ethical decision-making. Although all three methods address well-being, cost- effective analysis does not address autonomy; and neither technology assessment nor decision analysis addresses equity, especially as a concept of fairness. All three methods have shortcomings for validity, completeness and timeliness. These shortcomings diminish as study continues.

However, use of these methods can clarify issues, identify the need for research and draw attention to any imbalance in policy formulation. Given one’s values, choices within them can be made clearer. ‘Objective’ analyses depend on the personal values of analysts and the availability, of course, of data. Health policy, therefore, may best be considered in terms of society’s goals and produced by multidisciplinary consideration at the interface of facts and values.

The authors have studied a challenging issue, well illustrated by the example of neural tube defects. For the non-American reader fresh to this field, some of the terms in use and pattern of description are not easy to follow. Adjustment is required also to an American context of health care. Nevertheless, appreciation of the goals of American health policy and the implications for clinical genetics raised in this book provoke immediate concern for the future, even in more planned and comprehensive health care systems which nevertheless need a similar critical approach.

REFERENCE

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research. (1983). Summing up: Final report on studies of the ethical and legal problems in medicine and biochemical and behavioural research. Washington, D.C. : US Government Printing Office, March 1983. #040-00040475- 1.

IAN BAKER, District Medical Officer,

Bristol and Western District Health Authority, England.