Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era

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.