Privacy and Ethics in Pediatric Environmental Health Research-Part I: Genetic and Prenatal Testing
Fisher, Celia B., Environmental Health Perspectives
The pressing need for empirically informed public policies aimed at understanding and promoting children's health has challenged environmental scientists to modify traditional research paradigms and reevaluate their roles and obligations toward research participants. Methodologic approaches to children's environmental health research raise ethical challenges for which federal regulations may provide insufficient guidance. In this article I begin with a general discussion of privacy concerns and informed consent within pediatric environmental health research contexts. I then turn to specific ethical challenges associated with research on genetic determinants of environmental risk, prenatal studies and maternal privacy, and data causing inflicted insight or affecting the informational rights of third parties. Key words: adolescents, confidentiality, environmental health, ethics, genetic determinants, informed consent, pediatric research, prenatal testing, privacy.
At the dawn of the 21st century, increased political and media attention on existing and emerging ecologic hazards and environmental toxicants has rekindled public anxiety about the health consequences for future generations. These concerns have propelled research on genetic susceptibility and environmental conditions threatening the nation's youth. Research approaches to confirmed, suspected, or as yet unidentified relationships between the environment and developmental disorders have included assessments of biologic mechanisms through which environmental toxicants affect children's health, identification of populations that may be genetically susceptible to environmental diseases, and evaluation of interventions designed to mitigate harms associated with environmental hazards (Sharp 2003).
The pressing need for empirically informed public policies aimed at understanding and promoting children's health has challenged environmental scientists to modify traditional research paradigms and reevaluate their roles and obligations toward research participants. New methodologic approaches to children's environmental health research raise ethical challenges for which current federal regulations and organizational standards may not provide sufficient guidance. One such challenge is how to construct a cohesive ethical framework for protecting the privacy rights of children and families participating in the diverse set of methodologies, age groups, and populations characterizing pediatric environmental health research.
Data from environmental research can lead to policies preventing or remediating environmentally based developmental disorders. At the same time, disclosure of such information can lead to personal or group stigmatization, restriction in employment opportunities, or higher rates of or inability to obtain health insurance in both childhood and adulthood. Ethical concerns regarding the collection and risks of disclosure of private environmental health information not only revolve around the principle of individual autonomy but also relate to principles of beneficence (do good) and nonmaleficence (do no harm) (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1978). Thus, risks to participant privacy rights need to be considered in any risk-benefit justification for the conduct of research. Ethical challenges are compounded when poor and less powerful populations are recruited for environmental hazards research. Attention to genetic susceptibility and cultural practices associated with environmental disease in underserved groups can unintentionally promote existing health disparities by placing responsibility on the population rather than environmental policies.
The direct and indirect implications of privacy violations on the health and social welfare of children places the adequacy of privacy protections at the forefront of ethical concern in the design, implementation, and dissemination of research on children's environmental diseases. …