S A M P L E
CODE OF RESEARCH ETHICS
as adapted by the Alaska Native Science Commission from
the Kahnawake Schools Diabetes
Copyright 459302 (January 22, 1997)
The [Name of Project] is a partnership of the people
of the [Name of Community] and researchers of [Name of Research
Organization]. In this document these groups are referred to as
The community is represented by the [Name(s) of Community
Organization and Community Researchers] and the researchers by the
[Name(s) of Researchers].
The partners will work cooperatively and collaboratively
in the design, implementation, analysis, interpretation, conclusion,
reporting and publication of the experiences of the project. Each
partner provides ideas and resources that come from the experience,
knowledge and capability of all its members. Together, through respect
for each other, consultation, and collaboration, they significantly
strengthen the project and its outcomes. All partners of the project
share an understanding that community based research is a powerful
tool for learning about the community while contributing to the
community in which it is being conducted.
Collaborative research acknowledges that there must
be respect for the scientific and social integrity of the project.
Each group has obligations towards the other partners.
PURPOSE OF THE CODE OF ETHICS:
The purpose of this code of ethics is to establish
a set of principles and procedures to guide the partners to achieve
the goals and objectives of the project. The code outlines the obligations
of each of the partners through all of the phases of the project,
from the design of the research through to the publication and communication
of the experiences of the project.
The sovereignty of the community to make decisions
about research in the community is recognized and respected. The
researchers should maximize the benefits to the community as a whole
and to individual community volunteers. Research should empower
the community to support community goals of health and wellness,
to improve its conditions and to fulfill its traditional responsibility
of caring for the generations to come.
- The community must be involved as a full partner in all aspects
of the research. Continuous consultation and collaboration should
characterize the partnership.
- The strengths and culture of the community, including community
researchers and staff as well as material resources, must be
respected and utilized whenever possible.
- Written permission must be obtained from the partners before
beginning the research projects.
- Permission from all individuals participating must be obtained
prior to collecting personal information.
- The confidentiality of all individuals must be respected.
If necessary, the community involved may choose to remain anonymous
when reporting the results.
- All research results, analyses and interpretations must first
be reviewed by the partners to ensure accuracy and avoid misunderstanding.
- All data collected belongs to the community and must be returned
to the community.
- The partners must all be involved in making decisions about
the publication and the distribution of all or parts of the
- The community must agree to the release of information.
OBLIGATIONS OF THE PARTNERS
OBLIGATIONS OF THE RESEARCHERS:
- To do no harm to the community.
- To involve the community in active participation rather than
- To ensure the design, implementation, analysis, interpretation,
reporting, publication and distribution of the research are
culturally relevant to the community and in agreement with the
standards of competent research.
- To undertake research that will contribute something of value
to the community in which the research is being conducted.
- To impart new skills to community members.
- To help to address any issues that are raised as a result
- To provide expertise to scientifically answer questions that
emerge from the community.
- To promote academic diffusion of knowledge through written
publications and oral presentations. This includes the documentation
of the undertaking of the project and of the results.
- To be guardians of the data until the end of the project
and to return that data to the community at the end of the project.
- To be involved in any future analysis of the data after the
data has been returned to the community.
OBLIGATIONS OF THE COMMUNITY RESEARCHERS:
Community researchers are regarded as the Project
Staff and those Co-investigators who are employed within the community.
In addition to the obligations listed for researchers, the community
researcher is obligated:
- To maintain a long-term relationship of trust in the dual
role of caregiver, educator, and researcher: this will only
be possible if the needs of the community are always considered
as the first priority in any decision.
- To communicate with researchers during all phases of the research.
- To arrange for researchers to meet with the partner Committees
and/or Board of Directors, and any other local organizations
to implement and promote the project.
- To facilitate supervisory meetings of the Intervention and
- To participate in all phases of the project, review all research
results, analyses and interpretations for accuracy and present
information to the community.
OBLIGATIONS OF THE COMMUNITY PARTNER:
- To represent the community through their respective organizations.
- To be updated by the Project Staff on a determined basis
to support the development and offer analysis of the activities
to ensure compatibility with the project goal and objectives.
- To meet with the Project Co-investigators to maintain awareness
and to offer recommendations concerning the research aspect
of the project.
- To communicate with representatives of other communities
to share ideas and program development for benefit and involvement.
- To serve as the guardian of all evaluation data after the
completion of the project.
- To receive all requests for the use of the data by other
researchers after the completion of the project.
- To approve of or write a disagreement to the interpretation
of the data analysis.
The purpose of the project is to investigate the research
questions described in the protocol. Since this project is unique,
the results will be of interest to many other communities. For this
reason it is necessary to share the experience of the project with
the largest audience who might benefit from it. Part of the research
process includes the communication of research results to other
people and organizations in similar areas of research.
Communications will be directed at four general audiences:
- Health, Education and other officials
- Scientists and Researchers
- The Community Council or governing body
- The community, at large.
Health, education and other officials are those people
providing services or working on programming and planning. They
will be interested in how the project was developed and implemented
as well as the outcome of project efforts. Scientists and researchers
will be interested in the methods used, the process of the program,
the impacts measured, and the answers provided to the research questions.
The community at large is everyone who participated in the project
as well as those who are generally interested in the project goals.
All aspects of the project can be considered as worthy
of communication. All communication pertaining to the project will
follow generally accepted ethical standards. The principles include:
- Anonymity: Results to be presented in a grouped, not individual
- Confidentiality: All personal information provided by individuals
will be made anonymous whenever possible and remain confidential
unless otherwise determined by the individuals.
- Priority of Communities Involved: The communities participating
will be the first to review and receive results and the first
invited to provide input and feedback on the results.
- Respect: Consideration for the communities and all participants
must be observed in all communications.
Results from research projects usually are presented
in the following ways:
- Articles in scientific journals, referred to as "a paper".
- Oral presentation of "a paper" at a scientific
conference or meeting.
- Oral presentation to the community at large.
- Written document to the community at large.
- Teaching examples.
For scientific journals and oral presentations at
scientific conferences and meetings there is a standard process
involved. It is therefore possible to outline the steps from idea
to final communication and outline the responsibilities for those
involved with the authorship. However, these points should also
apply to communications to the community. From here on the word
communication will be used to describe both oral presentations and
It will be the responsibility of the project partners to ensure
that the staff and investigators who have made significant contribution
to the project can qualify for authorship. These are people who
have worked directly on the project. However, being involved only
in data collection or delivery of a program will not be sufficient
- The Idea:
All ideas for communications must be presented to the partners
before writing begins.
- Preparing the Communication:
The first author of an article (i.e. the person whose name appears
first on the article) will assume the major responsibility for
preparing the article. The first author will assume most of
the writing responsibility. Other authors contributing to the
communication will appear in descending order. This order will
depend on the contribution made to the subject of the communication
and the preparation and writing of the communication, including
hunters and elders, in the body of the document and the author's
- Submitting a Communication:
All authors on the paper must approve of the final version before
the paper is submitted to the journal, conference, etc. Furthermore,
final versions of all papers must be approved by the partners
- Peer Review:
Communications may be reviewed by scientific and community people
considered knowledgeable in the subject of the communication.
This peer review process may result in suggested changes of
the communication in order for publishing the article in the
journal of interest. All the authors of the communication must
approve any changes made in the review. This will be done by
a letter to the editor signed by all the authors.
This next section deals with special communications
An abstract is a short summary of the content of a communication.
When someone wants to present a paper at a conference, an abstract
will be sent to the conference organizers. The abstract will
then be used to decide if the communication will be accepted
for presentation. In case of a late call for an abstract, the
partners should be contacted as soon as possible. If there are
no objections, the abstract should be sent immediately. The
preparation of the communication will proceed following the
steps outlined previously.
- Responsibility of Communication by the Partners:
It is part of the shared responsibility of the partners to prepare
communications for the community and the scientific community.
Those who have more of an interest in them would appropriately
prepare communications for the community: likewise for communication
to the scientific communication. This should not limit the authors
to one or the other.
CODIFICATION, DATA ENTRY AND DATA CLEANING
- The activities organized by the project should ensure that
the data collection process is in accord with the host community
values and norms, and competent scientific practice.
- Participation in the evaluation activities is voluntary for
the people in both communities. The people who express the desire
to withdraw will be able to do so at any time.
- All information or data collected on individuals will be
kept strictly confidential. An identification number will be
given and the names of participants will be removed. A file
containing names and identification numbers will be kept for
future follow-up. Only the Project Coordinator will have access
to this file.
- For reasons of confidentiality, the person responsible for
coding the collected information should not have access to the
names of the participants. The names of the participants should
be removed prior to data coding.
- The coordinator is responsible for the quality control of
the data coding and entry.
PROCESS FOR APPLICATION TO RESEARCH IN CONJUNCTION
WITH THE PROJECT:
The researcher and community need to meet for the
purpose of discussion and approval of the research idea and the
protocol involved. To meet this end, the following steps will be
followed to make application:
- A letter is sent to one of the partners to request a meeting
to discuss the research proposal. This letter is to include
a summary description of the proposed research, a time frame
for research, reporting, and the expected conclusion.
- The recipient of the request is responsible to: distribute
the material to the other partners within one working week of
receipt of the letter, establish a meeting with the partners
and the researcher, and send a copy of the Code of Research
Ethics to the applicant to allow for preparation.
- If there are no objections from any of the members of the
partners to the research proposal, formal written consent is
to be sent within thirty (30) days of the meeting.
- In the event of any objections, a second meeting with the
proposed researcher is to be held within two working weeks for
discussion on the objection.
- The researcher must agree to comply with all aspects of the
project Code of Research Ethics. The proposal will be rejected
if the researcher refuses to comply with any aspect.
- All partners will review and discuss the completed research
document(s) before publication. This review is to take place
thirty (30) days following receipt of the research document(s).
- If there is any dissent, the dissenter is responsible to
write and present a written response at this meeting. The dissent
is to be included with the submission of the research document(s)