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Genetic SecretsReview - Genetic Secrets
Protecting Privacy and Confidentiality in the Genetic Era
by Mark A. Rothstein (editor)
Yale University Press, 1997
Review by Bryan Benham
May 19th 2000 (Volume 4, Issue 20)

In a casual review of news articles on recent genetic advancements a number of developments stand out. USA Today reports (May 9, 2000) that a genetic database of convicted violent offenders has been very successful in catching criminals and freeing wrongly convicted people. A national database that currently has about 280,000 DNA samples and about 750,000 samples awaiting analysis has just been awarded more federal funds to help analyze the backlog. It is estimated that the newly analyzed samples (about 250,000) will yield about 250 matches. In another article in the same paper (May 9, 2000) the international team of scientists that make up part of the Human Genome Project announced that it has deciphered the genetic code for chromosome 21, which holds genes involved in Alzheimer's, Lou Gehrig's disease, and a key gene in the formation of Down syndrome. This is the second of the twenty-three human chromosomes to be fully mapped and sequenced since the inception of the Human Genome Project. The hope is that these and future developments will aid in the diagnosis and treatment of disease and other human ailments that have a genetic basis.

Along with the rapid technological improvements in genetics and computer information systems come troubling questions about the uses of this new store of genetic information. In March of 2000 President Clinton and British Prime Minister Tony Blair made clear that no one should own or patent the information that results from the Human Genome Project, thus voicing a concern about the commercial interests in current and future genetic research. A more troubling situation arose in Reykjavik, Iceland. According to a report by CNN (March 3, 2000) Iceland has sold the medical and genealogy records of its 275,000 citizens to a private research company, in effect turning the entire nation into a virtual petri dish for research on disease and inheritable traits. Members of the Icelandic medical community have objected to this sale arguing that the genetic information might breech the trust held between doctor and patient. At the time of the news report only about five percent of Icelanders have chosen not to participate.

Other concerns about privacy and confidentiality of genetic information can be readily teased out of these reports. Who should have access to genetic? How will this information be used? Should public policy or private commercial interests direct legislation for access to genetic information? What exactly does the genetic and other medical information tell us about more complex diseases and behavioral traits? Does the potential medical good of the whole outweigh the privacy of individuals? For law enforcement purposes who should be required to submit genetic samples? Should juvenile offenders? What about people convicted of non-violent crimes? Since informational privacy is understood as an established right questions regarding the use and availability of genetic information mark out an area of concern that can be labeled genetic privacy. It is evident that in a world where the rapid development of genetic and informational technology far outstrips our ability to systematically consider the implications for social policy and individual privacy what is needed is a clear and comprehensive account of the current and future status of genetic privacy.

The collection of essays that make up Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, edited by Mark Rothstein (1997), promises to fill just such a need. Published as a result of a workshop on the Right to Privacy held at the National Academy of Sciences in Washington, D. C. in June of 1994, the volume provides a valuable resource for any intelligent discussion of privacy and confidentiality in the age of genetic science and increased information sharing. The twenty-three essays that compose the volume survey the past, present, and future condition of genetic privacy across a broad range of areas. The essays are thoughtfully organized into five major sections with a concluding essay by the editor summarizing the volume.

In the first section three essays introduce the reader to some of the more technical elements of genetic science, providing essential background for the issues that will occupy the remaining essays in the collection. Although at times overly technical the essays do provide a sound basis for considering privacy issues in the storage and use of genetic information. In addition, an essay by Thomas Murray (60) provides a provocative argument for treating genetic information like any other medical information, suggesting that no sound arguments have established that genetic information is particularly unique and thus require special treatment apart from other sensitive medical information.

In part two several essays discuss the implications of genetic privacy in the health care setting. One theme that unites these essays is the concern over the possible misuses of genetic information and how an uninformed use of genetic information in the clinical setting might undermine the patientís confidence in physician care and compromise the confidentiality of patient records. David Orentlicher (77), Eugene Pergament (92) and Barbara Biesecker (108) discuss the patient-physician relationship and genetic counseling. Ellen Clayton (126) provides an overview of the problem areas regarding informed consent and Scott Burris and Lawrence Gostin (137) draw instructive parallels between the public policies of HIV screening and the genetic screening practices, arguing that public health policy has not adequately learned the lessons needed to preserve privacy and avoid the potential stigmatization and discrimination that may be associated with genetic conditions.

The third section collects essays that focus on a range of commercial and forensic concerns surrounding the storage and use of genetic information. While still largely focused on potential medical uses of genetic information the essays in this section probed a number of societal concerns. For example, an essay by Robert Cook-Deegan (161) examines the possible conflicts between commercial interests in genetic information and the confidentiality of individual and family subjects in research and clinical trials. One problematic area is how future, and possibly unforeseen, benefits might be justly distributed to patients and family who have contributed genetic information. In two essays on the Forensic applications of genetic testing and data banking Randal Murch and Bruce Budowle (212) and Jean McEwen (231) provide a comprehensive account of the problem areas in the judicial and law enforcement use of genetic information. The use of genetic fingerprinting has already provided a surprising number of cold hits for solving unsolved crimes and thus provides greater support for the continued and expanded use of genetic information for identifying suspects and offenders, but a particularly troubling issues arises in the context of evidential use of genetic information to mitigate the responsibility a convicted criminal may have for committing certain actions. The reliability and predictive value of genetic information, especially in regards to behavioral traits, is still controversial. Genetic science, in and out of the courtroom, will have a profound impact on how we understand ourselves and others as responsible agents.

In part four a variety of non-medical uses for genetic information are surveyed including family duties regarding the testing and reporting of genetic diseases, the use of genetic testing in the workplace, implications of genetic information for health and life insurance, the potential use of genetic testing in the school setting, and adjudicating responsible action on the basis of genetic information. Each of the essays in this section provide inclusive overviews of the current and potential uses of genetic information. Lori Andrews' (255) essay on genetic information and family relationships clearly illustrates the asymmetry between parental and child rights to genetic testing, and the legal and moral duties that are entailed by such rights. Andrews also includes an illuminating discussion of the use of genetic information in adoption practices. The essay by Franklin Zweig, Joseph Walsh and Daniel Freeman (332) adds to the discussion about the proper role of genetic information in judicial proceedings. In this essay a case study of a capital trial raises questions about how genetic information informs our judgement about responsible human action. The essay by Nancy Kass (299) reviewing the implications of genetic testing for health and life insurance is a helpful account of the intricacies of defining and regulating the use of genetic information (or any sensitive medical information) in insurance.

In the fifth and final section of this volume the essays revolve around current and future legal standards for genetic privacy. Interestingly enough the two essays by Madison Powers (355) and Philip Reilly (369), focused on American law, show that the current status of privacy protections for genetic information are covered in the laws that protect discrimination on the basis of disabilities. Laws such as Americans with Disabilities Act (ADA) are the most applicable for protecting individuals and groups from unfair treatment on the basis of genetic information. The remaining two essays of this section provide an enlightening survey of international and comparative laws that protect privacy. Paul Schwartz (392) in his account of European data protection law, for example, demonstrates that compared to the European protections the United States is far behind in both technological and legal protections for sensitive medical information. Likewise the survey of international and comparative concepts of privacy offered by Sonia Le Bris and Bartha Knoppers (418) suggests that the concept of privacy is not and should not be a monolithic concept, but instead a fluid and evolving principle that can guide current and future legislation. All the authors of this section agree that current policy and legislation is inadequate to provide any robust protection for individual or family privacy regarding genetic information. Yet, there is an almost unanimous agreement among the authors of this volume that no single comprehensive legislative package will be able to cover genetic privacy issues adequately. The best legislative models support either increased protection for medical information generally or the improvement of existing legislation to include certain species of genetic information without unduly prohibiting medical research and fair access to information for insurance and public policy purposes.

The closing essay by the editor Mark Rothstein (451) provides a grand summary of the topics covered in the anthology with his own policy recommendations on a number of key issues. Because of the wide range of material covered in this collection the editor's essay may have better served the reader if it was placed at the beginning of the volume and focused on defining the general problem areas to be discussed by the contributing authors. But as it stands the concluding essay is a outstanding capstone for the collection.

No single collection of essays, especially on such rapidly changing topics as genetics and confidentiality, can possibly satisfy all the needs of a reader interested in genetic privacy. So there is always room for improvement. Two areas of particular concern are the unfortunate lack of material dedicated to the use of genetic information for health insurance and managed care services, and a less than systematic treatment of more fundamental conceptual issues surrounding genetic privacy. In the reviews of proposed and existing legislation on protecting genetic information (Part Five) the overwhelming aim of the proposed legislation was to limit the use of genetic information for health insurance purposes so that genetic data cannot be used to either unduly frestrict or refuse health insurance to individuals or groups. The current collection includes only one dedicated essay on health and life insurance (Nancy Kass, 299), with a spattering of discussions in only a handful of other essays not directly concerned with insurance and genetic information. Entire sections of the volume were rightly dedicated to topics such as the clinical use of genetic information, legal concepts of genetic privacy, and social implications of genetic science, but no such section was set aside for health (or life) insurance. Considering the overwhelming concern associated with health insurance and the increased management of health care it is surprising, and a bit disappointing, that a more comprehensive treatment of genetic privacy in these areas was not forthcoming.

Additionally, the majority of essays consisted of surveys of problem areas and current legislative standards regarding the use and availability of genetic information. Brief arguments for or against a particular conceptual issue related to genetic privacy were offered in the course of most of the essays, but no sustained treatment of the relative merits of these arguments or the implications of a number of conceptual issue was offered. Conceptual problems regarding the special status of genetic information, the merits of comprehensive legislation to protect genetic or other medical data, and the status of individual privacy rights in regard to present or future genetic findings among other issues were not offered as a thematic topic of discussion within or between the essays. The excellent essay by Thomas Murray (60) is a case in point. Murray provides a sustained argument that genetic information is not significantly different from other forms of medical information, and thus it would be a mistake to treat genetic information separately from other medical information when considering privacy issues. The inclusion of Murray's essay in the introductory background section of the anthology, however, suggests that the status of genetic information will be a leading topic of concern for the authors that follow. Yet, the topic receives only passing reference by those few authors who spend any time remarking about the status of genetic information. The disappointment is more remarkable since the majority authors seems to view genetic data as a unique and especially sensitive form of information that has a direct bearing on an individualís autonomy. In the mind of this reviewer, this collection would greatly benefit form the inclusion of a more systematic treatment of the conceptual problems underlying any discussion of genetic privacy. Of course, no anthology can be everything to everyone, and the desire to see a debate on conceptual issues among the authors may reflect this reviewerís own philosophical inclinations more than any weakness in the anthology. Nevertheless, it is not unreasonable to expect an intelligent discussion of the ethical problems sustained by our common need to preserve privacy and confidentiality in the face of the increasingly widespread use of genetic information requires should require some account of the underlying conceptual issues involved.

Despite these two minor and perhaps idiosyncratic concerns the anthology Genetic Secrets provides an admirable service as a compendium of resources for any open discussion of privacy issues in the age of genetic information.

Bryan Benham is currently a visiting professor at James Madison University in Virginia. His academic interests focus on topics in the philosophy of mind, especially conceptual problems surrounding explanations of human behavior. He is also interested in ethical issues related to the environment, sexual politics, and the implications of genetic science.


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