Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations
and Individuals
Colin L. Soskolne
Department of Public Health Sciences, University of Alberta,
Edmonton, Alberta, Canada
Abstract
Calls for professional accountability have resulted in the development of ethics guidelines by numerous specialty and subspecialty groups of scientists. Indeed, guidelines among some health professions now address vulnerable and dependent groups; but these are silent on issues related to biomarkers. In parallel, attention has been drawn to human rights concerns associated with attempts to detect hypersusceptible workers, especially in democratic countries. Despite this, concern for vulnerable populations grows as advances in biomarker technology make the identification of genetic predisposition and susceptibility markers of both exposure and outcome more attainable. In this article, the principles derived from the ethical theory of utilitarianism provide the basis for principle-based ethical analysis. In addition, the four principles of biomedical ethics--respect for autonomy, beneficence, nonmaleficence, and social justice--are considered for biomarker studies. The need for a context in which ethical analysis is conducted and from which prevailing social values are shown to drive decisions of an ethical nature is emphasized; these include statutory regulation and law. Because biomarker studies can result in more harm than good, special precautions to inform research participants prior to any involvement in the use of biomarkers are needed. In addition, safeguards to maintain the privacy of data derived from biomarker studies must be developed and implemented prior to the application of these new technologies. Guidelines must be expanded to incorporate ethical, social, and legal considerations surrounding the introduction of new technologies for studying susceptible populations and individuals who may be vulnerable to environmental exposures. -- Environ Health Perspect 105(Suppl 4):837-841 (1997)
Key words: applied ethics, biomonitoring, genetics, guidelines, health risks, human rights, industrial toxicology, law, political ideology, privacy, technology
This paper was prepared as background for the Workshop on Susceptibility to Environmental Hazards convened by the Scientific Group on Methodologies for the Safety Evaluation of Chemicals (SGOMSEC) held 17-22 March 1996 in Espoo, Finland. Manuscript received at EHP 5 November 1996; accepted 18 November 1996.
In preparing this paper, I have drawn heavily on material published by the International Commission on Occupational Health, Council for International Organizations of Medical Sciences, and, in particular, papers of Paolo Vineis, among others, contained in the bibliography.
Address correspondence to Dr. C. Soskolne, Department of Public Health Sciences, Faculty of Medicine, 13-103 Clinical Sciences Building, University of Alberta, Edmonton, Alberta, Canada T6G 2G3. Telephone: (403) 492-6013. Fax: (403) 492-0364. E-mail: colin.soskolne@ualberta.ca
Abbreviations used: CIOMS, Council for International Organizations of Medical Sciences; ICOH, International Commission on Occupational Health
[Table of Contents]
[Full Article]
Last Update: July 1, 1997