Genetic Secrets : Protecting Privacy and Confidentiality in the Genetic Era

by Edited by Mark A. Rothstein; Foreword by Arthur C. Upton

• ISBN13: 9780300080636
• ISBN10: 0300080638
• Format: Trade Paper
• Copyright: 1999-11-10
• Publisher: Yale University Press

Summary

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.

Excerpts

Foreword

by Arthur C. Upton

Few developments are likely to affect human beings more profoundly in the long run than the discoveries resulting from advances in modern genetics. The increasingly powerful diagnostic, predictive, and life-enhancing tools generated by molecular genetics and biotechnology have already begun to revolutionize medicine, science, animal husbandry, and a growing number of industries.

Exemplifying the power of the new technologies are their uses to: (1) identify the specific strains and sources of microorganisms responsible for certain outbreaks of tuberculosis and Legionnaire's disease; (2) implicate the human papilloma virus in causing most cancers of the uterine cervix; (3) elucidate many other aspects of carcinogenesis; (4) clarify the casual mechanisms of certain allergic reactions; and (5) give rise to increasing numbers of new and improved varieties of disease- and pest-resistant animals and plants.

Although the developments in genetic technology promise to provide many additional benefits to humankind in coming years, their application to genetic screening poses ethical, social, and legal questions, many of which are rooted in issues of privacy and confidentiality. Still to be resolved, for example, is how much the highly personal information contained in one'' genome differs in kind from other medical and legal information and, consequently, deserves greater protection against disclosure to one's employer, health insurer, family members, and others.

Concerns about the disclosure of genetic information are prompted in large part by the fear that such knowledge could stigmatize the affected person and also, perhaps, members of his or her family, causing such persons to be barred from employment, denied insurance, or subjected to other discrimination. Such concerns are heightened, moreover, by the fact that protection of the confidentiality of genetic information is being rendered increasingly difficult by the computerization and electronic transfer of medical records, coupled with the rapid growth of managed care and other sweeping changes in the organization of health care delivery system.

Also complicating the issue is the tension that exists under certain circumstances between the desire to respect the confidentiality of genetic information and the competing need or responsibility to share the information. For example: (1) a parent who possesses a disease-causing gene may be under the moral obligation to share the information with his or her child if the health of the child would otherwise be jeopardized; (2) newborn infants in most states are required by law to undergo screening for phenylketonuria; (3) members of the military are required to contribute specimens of their DNA to a central armed forces repository in order to facilitate the identification of their bodies if they are killed in the line of duty; (4) criminal offenders are required in many states to contribute DNA to databases maintained for forensic purposes by law enforcement agencies; and (5) persons in all walks of life are increasingly being called upon to contribute to DNA data banks for research purposes. Although most DNA banks and DNA databases are generally acknowledged to serve important and beneficial purposes, the adequacy of existing safeguards for protecting the confidentiality of the genetic information they contain is not without question.

Also subject to question are the circumstances under which genetic information should, or should not, be disclosed to the affected individual. For example, should a person who is found on genetic testing to carry a gene mutation that may predispose him or her to a disease of uncertain likelihood, for which no methods of treatment or prevention are known, be told of the condition, even if the disclosure under such circumstances might possibly do the person more harm than good? Also, by extension, if the same allele might pose a risk to other members of the person's family, who also happen to be carriers of the same mutation, should they too be notified?

The ethical, practical, and legal ramifications of these and related questions -- which are at the forefront of contemporary medicine and medical research -- are explored in depth in the chapters that follow. The broad range of topics covered in these chapters includes: the privacy and confidentiality of genetic information, considered from an ethical standpoint and also in the framework of the patient-physician relationship, public health, the family, and society at large; the challenges to privacy and confidentiality that may be projected to result from the emerging genetic technologies and from the application of such technologies to exposure surveillance, population screening, and forensic problems; the role of informed consent in protecting the confidentiality of genetic information in the clinical setting; including the issues surrounding the right to know or not to know; the potential uses of genetic information by third parties, including employers, insurers, and schools; the implications of changes in the health care delivery system for privacy and confidentiality; relevant national and international developments in public policies, professional standards, and laws; recommendations for addressing problems in each of these subject areas; and the identification of research needs. The chapters that follow address the privacy and confidentiality of genetic information of all types, considering the full range of their social, ethical, and legal ramifications.