Re: Outram SM. Epidemiology and Bioethics: A Plea for Reconnecting with the Public. [Ethics in Public Health] Can J Public Health 2011;102(1):4-6/author's Response
Soskolne, Colin L., Outram, Simon, Canadian Journal of Public Health
The arguments to reconnect both epidemiology and bioethics with the public are compelling and worthy of attention. I point out that many, if not most, professional societies have developed ethics guidelines (code of ethics). Guidelines are essentially designed to promote such functions through their articulation of normative practices. Thus, it was surprising to me to read this important contribution in the January/February issue and find no reference to ethics guidelines.
Ethics guidelines were first developed in 1991 by occupational epidemiologists.1 But it was in 1996 that the International Society for Environmental Epidemiology (ISEE) emerged as a leader in bridging the fields of epidemiology and ethics along the lines encouraged by Outram. Indeed, several of the key points that Outram appeals to are made in the ethics guidelines published by the ISEE in 19962 and present on its website since 1999.2 To quote from these guidelines:
From Article 4.1.2. "Consultation with stakeholders"
Possible mechanisms of consultation with members of affected groups or their representatives should be sought wherever appropriate. Study protocols should address potential concerns of affected groups and should articulate any potential negative consequences of the study to any individuals or groups. Environmental epidemiologists should inform the public about risks and benefits for individuals and communities resulting from environmental epidemiological research and practice.
From Article 4.2.4. "Widening the scope of environmental epidemiology"
There are general obligations in environmental epidemiology to carry out research, to advance knowledge, and to protect the public health. Environmental epidemiologists should employ the means available to them to enlarge the reach of sound epidemiologic inquiry and to disseminate their findings so that the widest possible community benefits from the research. Whenever information has been obtained that would be valuable to the larger epidemiologic or public health community, the information should be shared and should remain free of distortions that might be introduced by preconceptions or organized policies - irrespective of whether the research is conducted with private or public funds.
From Article 4.2.5. "Community involvement"
Discussions should be initiated at international, national and regional levels to facilitate community involvement and resolution of issues in environmental epidemiology practice... A project steering committee made up of representatives of all stakeholder groups is suggested as one mechanism for addressing these kinds of issues.
Research involving a community ought to include from the inception, or certainly prior to the formal design stage, through to completion of the study, community representatives (a) knowledgeable about the science (e.g. union and health representatives) and (b) affected by the problem being investigated (e.g. community stakeholders and also the unempowered). The Institutional Review Board, or its equivalent in different countries (e. …