The dramatic explosion of information brought about by recent advances in genetic research brings welcome scientific knowledge. Yet this new knowledge also raises complex and troubling issues concerning privacy and confidentiality. This thought-provoking book is the first comprehensive exploration of these ethical, legal, and social issues. Distinguished experts in law, medicine, bioethics, public health, science policy, clinical genetics, philosophy, and other fields consider the many contexts in which issues of genetic privacy arise?from research and clinical settings to workplaces, insurance offices, schools, and the courts.
The first chapters of this book set out a framework for analyzing genetic privacy and confidentiality, comparing genetic privacy with other forms of medical privacy. Later chapters deal with such topics as concerns that arise in the health care setting (the patient-physician relationship, genetic counseling and privacy); the effect of new technology (the role of commercial genomics, forensic DNA applications); nonmedical uses of genetic information (the law of medical and genetic privacy in the workplace, implications of genetic testing for health and life insurance); and a review of ethics and law in the United States and abroad. In the concluding chapter, Mark A. Rothstein discusses flaws in existing and proposed legislation designed to protect genetic privacy and confidentiality, and he offers a new set of guidelines for policy makers.
There is a need now and again to sit back and contemplate what we do. Science evolves not through a smooth progression of discoveries, but by a series of leaps and bounds. We are currently experiencing a revolution in genetic science. As a consequence, recently developed techniques have allowed us closely to examine our own genetic makeup for the first time. This has led to a greater understanding of known diseases, an improved ability to predict future health, an increasing understanding of behavior traits, and a wider range of reproductive options. New and more powerful techniques have been added to therapeutic, diagnostic, and agricultural industries. In the not-too-distant future, we may have effective treatments for some genetic disorders. Naturally, this revolution has created ethical and legal problems that lag behind our scientific understanding. The novel nature of the new-found knowledge leaves us struggling to develop a framework on which to base ethical guidelines and, ultimately, legal codes. Genetic Secrets and Genetic Ethics address different aspects of this issue.
As the title suggests, Genetic Secrets deals with issues of privacy arising from the use of the new forms of technology within our society. It is a collection of essays by authors experienced in various aspects of this field. There is at present no specific legal code covering the majority of genetic issues. This results in a confusing patchwork of state and federal laws, judgments in individual cases, and ethical guidelines issued by learned societies. The authors review comprehensively this difficult and challenging field. The writing style is clear, concise, and very readable. The reference sections at the end of each chapter are superb.
Genetic Secrets is organized into six sections. The first section, entitled "Background," includes a description of the scientific framework and discussions of legal concepts of privacy and whether genetic information should be treated in a fundamentally different way from other types of medical information.
Capitalizing on the introduction, the second section concentrates on aspects of genetic privacy in the health care setting. Physician-patient (or counselor-patient) relationships are covered. Special considerations pertaining to genetic information are discussed, together with difficulties in obtaining consent from subjects for genetic research of a familial nature. Ellen Clayton's short chapter is of particular use to those on institutional review boards. Eugene Pergament points out many of the special problems that arise as a result of being privy to genetic information about someone who is not ill: what are the rights of the individual, and what are the rights of third parties with a legitimate interest in the client?
The third section explores the effects of the new technology in the fields of the commercialization of genetic information, population-screening applications, forensic applications, and DNA data banking. Robert Cook-Deegan warns of the potential mayhem that may ensue if the current system of granting patents is maintained. He explores several alternative strategies based on a more open system. The powerful combination of a DNA bank and modern computer technology is extensively reviewed in reference to both forensic work and military and research applications. Not only is information in a data base more rapidly disseminated, but also in many banks the DNA samples remain intact and a potential source of further research. The gradual erosion of privacy and the ethical dilemma that this induces are discussed.
The fourth section explores the nonmedical use of genetic information on families by occupational health offices of employers, insurance companies, and schools. Lori Andrews examines the issues surrounding the obligation to share genetic information within a family. For clinicians working with families, this is interesting reading. The legal and ethical obligations are less extensive than you might think. Mark Rothstein looks at occupational health aspects of medical and genetic privacy.
Genetic information differs from other medical information not in substance so much as in predictive power. How can anyone ensure that information of no direct relevance to an employer and yet potentially damaging to the employee remains private? Nancy Kass argues that legal reform of the health and life insurance industry is overdue and examines some possible solutions. The final chapter of this section looks at the legal challenges facing scientists and the legal profession in the immediate future.
The fifth section explores the use of the legal system in the protection of the individual, not only in the United States but also in Europe and other parts of the world with access to such technology. This section examines the North American ethical and legal scene and contrasts it with the rather different approach other countries have taken. The whole section is fascinating reading and increases the reader's depth of understanding of the current situation.
The concluding chapter, by Mark Rothstein, comprising the sixth section, is the piece de resistance that ties all the preceding chapters together with a series of recommendations for developing a policy framework. As Rothstein ruefully admits, it is easier to point out what is wrong than to suggest solutions. In a nutshell his thesis is that it will be more effective to reform existing laws than to generate new procedural law specifically to cover the genetic field. The current legal means of protecting genetic privacy are, in Rothstein's view, inadequate. A wide variety of professionals will find this book a good resource: clinical and research geneticists naturally, but also those on institutional review boards (or their equivalent), medical professionals who use molecular tests, medical advisors to insurance companies, and lawyers in the medicolegal field.
Genetic Ethics puts forth a Christian viewpoint on the new technology. The topics discussed in the book are wide ranging, but those dealing with prenatal diagnosis, eugenics, and the Christian perspective on genetic therapy (either germ line or somatic) I found of particular interest. The discussions concerning eugenics are particularly intriguing, although some of the points are contentious. Arthur Dyck, for example, chooses Huntington's disease as an example in which the use of predictive testing may amount to eugenic abuse. This aspect was well appreciated by physicians and research scientists when the genetic basis of the disease was discovered. Predictive testing was introduced only after consultation with those at risk.
The difficulty that Christians are experiencing in defining the boundaries between eugenics and good medical practice is well discussed. Interestingly, most of the authors are in favor of gene therapy, albeit with many provisos. All authors are of the opinion that such research should proceed. However, they acknowledge that distinguishing between genes linked to disease (deemed acceptable to treat) and those linked to an undesirable trait such as a behavior abnormality (deemed unacceptable to treat) will be difficult. All authors are opposed to the practice of prenatal diagnosis. This category includes virtually every technique in existence, from measurement of serum alpha-fetoprotein levels to screening for specific genetic disorders. Having seen the devastation repeatedly wrought by genetic diseases in many families, I find it difficult to accept the arguments that a loving God intends such things to happen repeatedly to some families.
Some of the doctrines expressed in this book (for example, the Fall of Man) seem curiously medieval in the modern world. Nevertheless, whether or not we are aware of it, such doctrines formed the philosophical background of the countries in which the genetic revolution has taken root and flourished. A recurring theme is the necessity of educating the laity so that they will understand the technology and capabilities of the new genetics. Without this knowledge, churches will be excluded from future discussions.
One criticism of the book is the lack of a feminist perspective. Feminist philosophy excels in the field of relational ethics. Surely, there is one Christian feminist who would have been able to voice the viewpoint of half our species. Ancient Jewish and Greek law forms the foundation of modern Western ethical thinking. The modern genetic technology will be available to and used by societies whose philosophical foundations differ from those of our own. Will they agree with our guidelines?
Reviewed by J. Stephen Bamforth, M.B., D.A.B.M.G.
Copyright © 1998 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.
