Background. As the development and use of genetic tests have increased, so have concerns regarding the uses of genetic information. Genetic discrimination, the differential treatment of individuals based on real or perceived differences in their genomes, is a recently described form of discrimination. The range and significance of experiences associated with this form of discrimination are not yet well known and are investigated in this study. Methods. Individuals at-risk to develop a genetic condition and parents of children with specific genetic (...) conditions were surveyed by questionnaire for reports of genetic discrimination. A total of 27,790 questionnaires were sent out by mail. Of 917 responses received, 206 were followed up with telephone interviews. The responses were analyzed regarding circumstances of the alleged discrimination, the institutions involved, issues relating to the redress of grievances, and strategies to avoid discrimination. (shrink)

Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because of the difficulty in (...) distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system. (shrink)

"Bringing the concerns of different communities together in a single volume makes it possible to appreciate the mosaic of human issues more fully and forces us to anticipate the challenges that may arise -- and that will require our attention -- as the genetic revolution proceeds." -- JAMA "A cautious look at the effects of genetic discoveries on society... The issues raised by this book are valid, and all scientists should be aware of them. I often found myself nodding in (...) agreement." -- New England Journal of Medicine. (shrink)

Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because of the difficulty in (...) distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system.Redundant publication in biomedical sciences is the presentation of the same information or data set more than once. Forms of redundant publication include “salami slicing”, in which similar text accompanies data presented in disaggregated fashion in different publications and “duplicate or multiple publication” in which identical information is presented with a virtually identical text. Estimates of prevalence of the phenomenon put it at 10 to 25% of published literature. Redundant publication can be considered unethical, or fraudulent, when the author attempt to conceal the existence of duplicate publication from editors and readers. Redundant publication in the area of clinical trials is potentially dangerous as it tends to overestimate the effects of interventions. The scientific community at large and governments should take urgent steps to safeguard the public from the possible effects of fraudulent multiple publications. (shrink)

Until approximately twenty years ago, advances in the study of human genetics had little influence on the practice of medicine. In the 1980s, this changed dramatically with the mapping of the altered genes that cause cystic fibrosis and Huntington disease. In just a few years, these discoveries led to DNA-based tests that enabled clinicians to determine whether prospective parents were carriers of CF or whether an individual carried the Huntington gene and, as a result, would almost certainly develop the disease.Observers (...) interested in the social and economic implications of genetic technology realized that such genetic tests could be used by insurance companies to predict which insurance applicants were likely to become ill or even die from these diseases. (shrink)

Until approximately twenty years ago, advances in the study of human genetics had little influence on the practice of medicine. In the 1980s, this changed dramatically with the mapping of the altered genes that cause cystic fibrosis and Huntington disease. In just a few years, these discoveries led to DNA-based tests that enabled clinicians to determine whether prospective parents were carriers of CF or whether an individual carried the Huntington gene and, as a result, would almost certainly develop the disease.Observers (...) interested in the social and economic implications of genetic technology realized that such genetic tests could be used by insurance companies to predict which insurance applicants were likely to become ill or even die from these diseases. (shrink)

The following views were presented at the Annual Meeting of the American Association for the Advancement of Science Seminar “Teaching Ethics in Science and Engineering”, 10–11 February 1993 organized by Stephanie J. Bird , Penny J. Gilmer and Terrell W. Bynum . Opragen Publications thanks the AAAS, seminar organizers and authors for permission to publish extracts from the conference. The opinions expressed are those of the authors and do not reflect the opinions of AAAS or its Board of Directors.