Ethics and Environmental Health Research

Scientific research does not happen in a vacuum – it involves many decisions and actions that can have profound impacts on individuals and communities well beyond the walls of the laboratory. At the CEEH, we are committed to making the ethical, legal and social implications of the work we do a major focus of our thinking. For example, we were involved in the the short video below. "People Matter" is a video and social media campaign aimed at raising researchers' awareness of the value of honoring and protecting the interests and rights of people involved in research studies.

Our Community Outreach and Ethics Core (COEC), directed by Dr. Kelly Edwards from the UW Department of Bioethics and Humanities in the School of Medicine, works with researchers and stakeholders to plan seminars, forums, and other events providing opportunities for frank discussions about the ethical challenges and implications of our work. Ecogenetics research occurs at the intersection of several different fields of practice, including environmental health, genetics, and genetic testing. Each of these fields gives rise to a unique set of ethical questions. Examples of these questions are provided below.

Ethical Dilemmas in Environmental Health Research

• Environmental health encompasses a broad range of research efforts aimed at understanding the health effects of the environments in which humans live and work. Some examples of ethical dilemmas encountered by environmental health researchers are:
• What level of risk is sufficiently high to qualify a given substance as a threat to human health?
• What level of risk is morally acceptable?
• At what level of risk do researchers have an obligation to communicate the potential health threat of a particular substance to the public?
• Should animals be used in scientific experiments? If so, when? What alternatives must be considered first?
• How much data from animal models is sufficient to move to a human trial?
• How should ambiguous or uncertain results be communicated to the public?

Ethical Dilemmas in Genetic Research and Testing

• Genetic research and testing help explain some of the variation in susceptibility to toxicants that is observed among individuals in the population. Some examples of ethical dilemmas encountered by genetic researchers are:
• In the process of conducting genetic research, a scientist may uncover important information about an individual participant's heath. Under what circumstances should this information be returned to the participant?
• Genetic research involves the collection of large numbers of DNA samples that investigators may want to keep for several studies. What policies should govern the sharing of these samples and the data derived from them? Who should have access to these DNA samples?
• Genetic research, particularly regarding the susceptibility of certain sub-populations, may result in that group being stigmatized. What measures can researchers take to protect groups that participate in genetic research from this type of harm?
• If certain individuals are found to be particularly susceptible to an industrial chemical, should companies that use that chemical be allowed to require genetic testing of employees? Should workplace genetic test results be used to discriminate against individuals for employment or insurance purposes?
• If a very small percentage of the population is found to be acutely susceptible to harm from a given substance, does the government have an obligation to protect them even if it is very costly to do so?

General Biomedical and Environmental Health Ethics Resources

NIEHS Bioethics Pages. These pages provide a good overview of the field of research ethics, including a Research Ethics Timeline from 1932-present. There are also links to events and both NIH and non-NIH resources related to the topic. The comprehensive introductory article "What is Ethics in Research and Why is It Important" by David B. Resnik is also extremely useful for thinking about ethics in the context of environmental health research.

The Hastings Center. The Hastings Center is an independent, nonpartisan, and nonprofit bioethics research institute whose mission is to address fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies. Their web site provides access to a broad range of publications, news updates, and their engaging Bioethics Forum.

The Northwest Association for Biomedical Research is a non-profit educational organization dedicated to promoting the public understanding of biomedical research and its ethical conduct. Their work centers on supporting excellence in science teaching, building connections between scientists and students, and strengthening the research community. Their web site has excellent resources for community members, teachers and students.

Research Ethics and Environmental Health. Part of the Collaborative Initiative for Research Ethics (CIRE) at Brown University, this project provided course development, training, educational resources and case study development on improving research ethics in environmental health. Of particular interest are the extensive links to case studis, articles and bibliographies related to the topic that are available through the CIRE web site.

Indigenous Peoples and Research Ethics

The Inuit Tuttarvingat centre of excellence of the National Aboriginal Health Organization (NAHO) has created an impressive Research and Research Ethics Fact Sheet Series. The series covers topics such as individual informed consent, the benefits and risks of health research, and issues of privacy and confidentiality. Although the materials are written specifically for use by Inuit communities, the content is relevant to a broad range of indigenous communities involved in research.