COMMUNITY MONITORING
Research Ethics
Research Ethics
Considering Research Ethics paper |
RESEARCH ETHICS
Introduction to Research Ethics
For communities engaged in environmental monitoring or environmental health assessments, it is important to be aware of research ethics and the potential impacts on participants. The right to monitor chemical pollutants in the environment and in body fluids is a crucial aspect of community right to know but also brings with it responsibilities to involve, inform and support all participants.
Health studies and health/environmental monitoring activities can benefit from active consideration of the ethical framework within which these activities take place.
While environmental health researchers do not have an official code of ethics to guide their research practices, they are morally bound to standard biomedical ethics, and in most cases to the ethics of participatory action research.
A fundamental principle of participatory action research is the active involvement of stakeholders in the research project, from the formulation of the problem to the interpretation of the findings.(1)
The identification of the aims of the research can also provide the basis on which to select the research methods. The challenges of inclusiveness, capacity building and empowering the participants require structured but flexible reiterative and reflective processes.
While research problems have traditionally been defined on the basis of "conceptual and methodological grounds,"(2) in participatory action research, the identification and definition of the research problem is heavily influenced by a commitment to solve 'real-world' predicaments.
In this section of the handbook is a copy of Dianne Quigley's paper from Syracuse University " Considering Research Ethics in the Conduct of Health and Environmental Monitoring Activities." This discusses some of the ethical questions faced by NGOs carrying out community and body burden monitoring.
As well in the library, you will find Elizabeth Guillette's paper on 'Performing A Community Health Assessment', which will guide you through the research process.
"In an uncertain and constantly changing environment, science must strive to develop the understanding, knowledge, forums and learning environments to better inform and support more sustainable decision-making. From this perspective, successful research and development efforts will be participatory in nature, and be based on a process of active adaptive management. In turn, finding out about complex and dynamic situations, then taking action to improve them, forms the basis for developing the necessary learning environment." (3)
Endnotes:
1 Hall, B.L., Gillette, A. & Tandon R., Creating Knowledge: a Monopoly? Participatory Research in Development Society for Participatory Research in Asia, New Delhi 1982 at 22
2 Brown, L.D. & Tandon, Rajesh, "Ideology and Political Economy in Inquiry: Action Research & Participatory Research", (1983) Vol. 19(3) Journal of Applied Behavioural Sciences at 284
3 Allen, W.J. Bosch, O.J.H., Gibson, R.G. & Jopp, A.J. "Co-learning our way to sustainability: An integrated & community-based research approach to support natural resource management decision-making." in S.A. El-Swaify and D.S. Yakowitz (eds) In Multiple Objective Decision Making for Land, Water and Environmental Management. Lewis Publishers, Boston 1998 at 51-59
Considering Research Ethics in the Conduct of Health and Environmental Monitoring Activities
Dianne Quigley
"Collaborative Initiative for Research Ethics in Environmental Health" Dept. of Religion
501 Hall of Languages
Syracuse University Syracuse, NY 13244
Tel. (315) 443-3861
email:diquigle@syr.edu
For communities engaged in environmental health research, it is important to gain an understanding of contemporary issues in the ethics of research relationships between community members and academic and government researchers. Health studies and health/environmental monitoring activities all can benefit from considerations of the ethical framework within which these health activities take place.
Ethical Obligations of Environmental Health Research
Environmental health researchers do not have an official code of ethics to guide their research practices. However, in that they operate within the field of public health, they are bound to standard biomedical ethics. Beauchamp and Childress (1994: 67) set out several major principles and their corresponding virtues, listed and discussed below: Beneficence is one of the oldest foundational values of medical ethics beginning with the Hippocratic Oath. It refers to a moral obligation to act for the benefit of others. The principle of beneficence includes four major elements (Faden and Beauchamp, 1986:10). These are usually listed in this hierarchical order:
(1) one ought not to inflict harm
(2) one ought to prevent evil or harm
(3) one ought to remove evil or harm
(4) one to do or promote good
Beneficence stresses promoting the welfare of individual patients and avoiding harm as medicine's goal. Faden and Beauchamp (1996) highlight that preventive medicine and active public health interventions have also long- embraced concerted social actions of beneficence such as vaccine distribution and health education as obligatory rather than optional.
The definition of harm in beneficence can be so broad so as to include setbacks to reputation, property, privacy, or liberty (Beauchamp and Childress 1994:193). Pellegrino (1985) views beneficence as critical to professional skills, specifically one's quality of technical excellence. Another key issue in beneficence is the balancing of benefits against harms, benefits against alternative benefits and harms against alternative harms. The conflicts that arise in these decisions about balancing benefits lead to the even more controversial issue of who has authority to make those decisions - the patient or doctor, the subject or researcher. The medical profession, specifically physicians, has struggled with issues of medical paternalism for centuries. Only in the last thirty years has the issue of respect for patient autonomy or autonomous choice emerged as a duty and virtue in biomedical ethics (Beauchamp et al.1994).
Currently, there are no standard ethical guidelines for public/environmental health research with "communities" as the subject of research instead of the individual. However, beneficence should be extended to community members in a research investigation. In addition, issues of "community informed consent" and respect for community autonomy are emerging as complex and challenging issues in the field of community research ethics. It is important to emphasize, however, that research harms that have been inflicted on communities without a standard operating set of ethical guidelines. These research harms are particularly grievous in culturally-diverse communities. In light of the discussion of beneficence, these following harms constitute violations to beneficence.
(1) Inadequate knowledge and understanding of the cultural beliefs, values, traditions and knowledge systems of the diverse community members involved in the research investigation. This leads to violations of respect and group norms when researchers pursue their individualistic agendas without community approval and support. Often this research has little benefit to community members; it produces stresses on community members who already are overburdened and leads to community exploitation (Montour and Macaulay 1988).
(2) A lack of formal consultation and involvement of the community in the research process. Many research efforts suffer from inappropriate methods and data results when the local community is not involved as a partner to develop culturally-appropriate methods and outreach strategies for data collection. These communities have developed a perception of researchers as doing "parachute research", swooping down, asking nosy questions, leaving the community never to be heard from again (Montour and Macaulay 1988). These types of research efforts can lead to a misrepresentation of data and false results and a potential stigmatization of the community if damaging findings are published without their knowledge or input (Davis and Reid 1990, Foster (1999) Additionally, crude and inadequate research investigations that lead to inconclusive findings can shut down research in the future for the communities involved.
(3) A dismissal and rejection of the local knowledge sources of the community residents in the research process. Several studies have demonstrated that academically-controlled research by western scientists on Native American and other culturally diverse populations has resulted in poor research results. This was caused by a neglect of special dietary patterns, lifestyle habits and subsistence activities which could have informed exposure/risk assessments and other critical research analyses (Frohmberg et al.2000, Harris et al.1997 and Fitzgerald et al. 1998). Diverse community members need to be involved in these types of studies as legitimate partners with specific knowledge expertise to contribute to the research process.
Lastly, ethical challenges exist in the need for skills-building and research infrastructure support in underserved communities who have suffered from environmental injustices. These communities have had a disproportionate share of environmental pollution from hazardous facilities than many affluent, white communities (Bullard et al.1993) while already burdened by many other health and socio-economic problems. When well-funded academic researchers arrive in these communities and do not leave any sustaining or beneficial community benefits behind, this becomes a deeper injustice to the adverse conditions already present there
Ethical Innovations in Environmental and Public Health Research
In the past decade, a new paradigm for community health research has been increasingly applied by scientists and community members. Community-based participatory research (CBPR) has gained much legitimacy in the field and has been a far more satisfying research arrangement for communities concerned with health impacts of contamination (Minkler et al. 2002,
For communities preparing for health and environmental monitoring, these are some selected ethical innovations that have emerged from community-researcher partnership models for research:
(1) Researchers should approach community leaders and institutions to learn about the community and its values, traditions and social structure before engaging in research activities.
(2) Researchers should partner with a local community group, organization or health institution in the development of a grant application or research project. Often, a community advisory committee is formed to provide input on the feasibility, the methodology, and acceptability of the project by the community. With the committee, the researcher can determine the benefit of the research to the community and be educated on cultural sensitivity issues (Maddocks 1992).
In these negotiations, there may be formal or informal agreements made between the community and the research institution about the research design and outcomes to be studied, the grant budget allocations, decision-making authority, roles/responsibilities of community members and researchers, periodic reporting by the research team to the community, data control and ownership issues, and interpretation and dissemination of research results (see ATFE 1996 for sample model). The community should be involved in all stages of the research process and may even conduct research activities with the scientists as partners. The community should ensure financial equity in all proposed research activities and may require its own community budget in a subcontract from the research institution or the community organization may be the lead organization and subcontract a portion of the grant budget to the researcher.
(3) It is important for the researchers to provide community education on the risks and benefits of the research approaches proposed and to discuss case studies of the success or challenges of the implementation of these approaches in other communities (ATFE 1996, Quigley et al. 2000). This may lead to some innovative designs in the research approaches that can overcome previous inadequacies.
(4) Community members and researchers should ensure that the local knowledge of community residents is a valid source of data to the research investigation. Oral histories, local interviews and community mapping and a number of other techniques can be sample ways of gaining this information (see Slocum et al. 1995) It is becoming increasingly important for community members to become knowledge-producers, as scientists are, about the local conditions of their environments (Kimmerer 2000).
(5) Researchers and their community partners should spend time on studying issues of informed consent as they apply to communities (see Foster et al. 1998, 1999, Faden et al. 1996). Important provisions need to be considered to protect communities from stigmatization if adverse health and environmental conditions are reported in the media or scientific literature. Community norms for decision-making need to be understood. Is community group authority undermined by individual consent taking precedent over community consent? How is community consent achieved? If community organizations own and control data, how is this data protected in terms of protecting the confidentiality of community members?
(6) In CBPR, community partners increasingly want control over data; its collection procedures, its release to the public and its dissemination procedures. Various groups have set up protocols for this (see ATFE 1996, IPCB 2000). The benefits and challenges of this should be carefully considered. Researchers often must abide by certain rules of data collection, storage and release from their academic Institutional Review Boards (IRBs). More discussion and field lessons on this issue are needed in community research ethics literature.
This list includes some of the most important considerations in forging partnerships between community members and research institutions. Currently, this author is involved in providing resources and technical assistance to communities and researchers on improving research ethics and can provide bibliographies and other technical publications at our website (www.researchethics.org) about these research ethics issues.
This research ethics work is supported by a grant from the National Institute of Health, National Institute of Allergies and Infectious Disease Grant Program for Research Ethics - T15 A149650-01
References:
Beauchamp, T. and Childress, J. 1994, Principles of Biomedical Ethics, Oxford University Press, Oxford, U.K.
Beauvais, Fred; "Obtaining Consent and Other Ethical Issues in the Conduct of Research in American Indian communities", Drugs and Society v. 14, i.1-2, p. 167, Winter-Summer 1999
Bullard, R.D. & Wright, B.H. Environmental Justice For All: Community Perspectives on Health and Research Needs. Toxicology and Industrial Health 9(5), 821-841, 1993.
Davis, Sally; Reid, R. "Practicing Participatory Research in American Indian Communities", American Journal of Clinical Nutrition,v.69, i4, p.755s(1), April 1999
Faden, R. and Beauchamp, T.1986, A History and Theory of Informed Consent , Oxford University Press, Oxford, U.K.
Fitzgerald, E. Hwang A., Cook K.,and Worswirk, P. (1998) "Fish Contamination and breat cancer milk PCB concentrations among Mohawk women in Akwesasne", American Journal of Epidemiology, 148, 164-72
Frohmberg, E.,Goble, R., Sanchez, V., Quigley, D.(1999) "The Assessment of Radiation Exposures to Native Communities from Nuclear Weapons Testing in Nevada" Risk Analysis, 20, No.1, 2000
Foster, MW; Bernstein, D; Carter, TH; "A model agreement for genetic research in socially identifiable populations." American Journal of Human Genetics. Sep. 63 (3) : 696-702, Sep, 1998
Foster, MW; Sharp, RR, Freeman, WL; Chino, M; Bernstein, D; Carter, TH; "The role of community review in evaluating the risks of human genetic variation research"; American Journal of Human Genetics. June. 64 (6) : 1719-27, Sep, 1999
Harris, S. and Harper, B. "A Native American Exposure Scenario" Risk Analysis, V. 17, no. 6, Dec 1997 Indigenous Peoples Council on Biocolonialism, "Indigenous Research Protection Act", at website: ipbc@ipcb.org 2000
Kimmerer, Robin Wall, Native Knowledge for Native Ecosystems, Journal of Forestry, Vol. 98, No. 8, August 2000
Macaulay, Ann, "Ethics of Research in Native Communities", Canadian Family Physician, v. 40, November 1994.
Minkler, M.and Nina Wallerstein, 2002 Community-Based Participatory Research for Health, Jossey-Bass
Montour, Louis T. and Ann Macaulay, "Diabetes Mellitus and Atherosclerosis: Returning Research Results to the Mohawk Community",CMAJ, V. 139, August 1, 1988
Pellegrino, E. 1986, "The Virtuous Physician and the Ethics of Medicine" in Virtue in Medicine:. edited by Earl E. Shelp, Reidel Publishing Co., Hingham, Ma
Quigley, D., Sanchez,V., Handy, D., Goble, R., George, P., 2000. "Participatory Research and Nuclear Risk Management of Native Communities".Journal of Health Communications, December
Quigley, Dianne 2003, "A Review of Ethical Innovations to Environmental and Public Health Research: Case Examples from Native Communities", manuscript submitted to Journal of Health Education, MI
Slocum, Rachel and Lori Wichhart, Dianne Rocheleau, Barbara Thomas-Slayter 1995, Power, Process and Participation - Tools for Change, Intermdeiate Technology Publications, London, UK
Wing, Steve 2002 "Environmental health research ethics: Lessons from community driven studies of industrialized hog production,"Environmental Health Perspectives, 110:437-444
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Contact Person: Dr Mariann Lloyd-Smith
Coordinator, National Toxics Network
Secretary, Community Monitoring Working Group
Email: biomap@oztoxics.org
IPEN Body Burden Community Monitoring Handbook - 2005
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