ETHICAL
GUIDELINES
FOR RESEARCH
with
Pacific
DAWN:
Pacific DisAbled Women's Network
Reprinted
with permission from Joan Meister
Contents
1. Guiding Principles
2. Preliminary Questions
3. Practical Guidelines
4. Implementation
Women with disabilities should be included in all research and when
we are, the following ethical guidelines must be agreed upon and observed
in order for the researchers to benefit from the expert and willing
participation of Pacific DAWN: Pacific DisAbled Women's Network
1. GUIDING PRINCIPLES
·
Women with disabilities have unique perspectives and understandings,
which derive from our experiences in the largely inaccessible world
in which we live. Research that has the experience of women with disabilities
as its subject matter must reflect these perspectives and understandings.
·
Whenever possible, research concerning women with disabilities must
be inclusive of all women with both mental and physical disabilities.
When a group of women with a specific disability (e.g., mental illness)
wish to research their own disability-specific issues DAWN may support/endorse
them.
·
Research concerning women with disabilities has usually been initiated
outside the disability community and carried out by non-disabled people.
Women with disabilities have had almost no opportunity to provide correct
information or to challenge non-disabled and/or male interpretations
of our experiences. Consequently, much of the existing body of research,
which normally provides a reference point for new research, must be
open to reassessment.
·
Knowledge that is transmitted by any means of communication by women
with disabilities must be acknowledged as a valuable research resource
(e.g., American Sign Language, Bliss boards, Telephone Devices for the
Deaf, Braille, etc.) along with documentary and other sources.
·
In research portraying women with disabilities, the multiplicity of
viewpoints presented by the lives of women with disabilities should
be represented fairly. DAWN encourages research that includes women
with a wide range of disabilities and that represents fairly the perspectives
of women of diverse ages, ethnicities. sexualities, classes, races,
etc.
·
Researchers have an obligation to understand and observe the protocol
concerning communications within any community of women with disabilities
(e.g., women who experience communication and education barriers such
as women who are non-verbal, women who are blind, hard of hearing or
Deaf, women with learning disabilities or those labelled mentally handicapped).
·
Researchers have an obligation to observe ethical and professional practices
relevant to their respective disciplines.
2.
PRELIMINARY QUESTIONS
Researchers
shall conscientiously address themselves to the following
questions:
- Are there
perspectives on the subject of inquiry that are distinctively access
oriented?/gender specific?/disability specific?
- What disability
sources are appropriate to shed light on those perspectives?
- Is proficiency
in a disability language/format required to explore these perspectives
and sources?
- Are there
particular protocols or approaches required to access the relevant
knowledge?
- Does disability
knowledge challenge in any way assumptions brought to the subject
from previous research?
- How will the
disability knowledge or perspectives portrayed in research products
be validated?
Methods
for conducting the research must reflect the social reality lived by
women with disabilities in any given areas. Questions must not be based
on the idea that it is the women or her reality that causes the problem,
rather that it is caused by her interaction with the inaccessible environment
(i.e. Instead of asking: What complaint causes your difficulty in holding
or gripping the bottle?, one could ask : What defect in the design of
the bottle causes you difficulty in holding or gripping it? (Oliver
1990).)
Traditional
research tools must be evaluated by a DAWN Research Committee or group
of women with disabilities in conjunction with like-minded progressive
researchers to ensure that the tools do not "blame the victim"
for social problems.
Wherever
possible, the principle of equality rights should be applied to any
research
3. PRACTICAL GUIDELINES
a)
Review Procedures
- A review of
research results shall be solicited both in the community of women
with disabilities and in the scholarly community prior to publication.
b) Access To Research Results
- Final reports
of research activities must be made available to the research participants.
Reports may be circulated in draft form, where scholarly and disability
community response at this stage is deemed useful.
- Research reports
or parts thereof shall not be published where there are reasonable
grounds for thinking that publication will violate the privacy of
individual women with disabilities or cause significant harm to
participating communities of women with disabilities or organizations.
- Results of
community research shall be distributed as widely as possible within
participating communities, and reasonable efforts shall be made
to present results in Plain Language and appropriate alternate formats.
c) Community Benefits
- In setting
research priorities and objectives, the researcher(s) shall give
serious and due consideration to the benefits for the community
of women with disabilities.
- Whenever possible,
research should support the transfer of skills to individual women
and increase the capacity of the community of women with disabilities
to manage its own research.
- In assessing
community benefit, regard shall be given to the widest range of
community interests and also to the impact of research at the local,
regional and/or national levels.
d)
Consent
- Informed consent
shall be obtained in all required alternate formats from all women
with disabilities and groups of women with disabilities participating
in research, regardless of the type of disability.
- Consent should
ordinarily be obtained in writing. Where this is not practical,
the procedures used in obtaining consent should be recorded.
- Individuals
or groups of women with disabilities participating in research shall
be provided with information about the purpose and nature of the
research activities, including expected benefits and risks.
- No pressure
shall be applied to induce participation in research, monetary or
otherwise.
- Participants
should be informed that they are free to withdraw from the research
at any time.
- Participants
should be informed of the degree of confidentiality that will be
maintained in the study.
e)
Collaborative Research
- In studies
located principally in disability communities, researchers shall
establish collaborative procedures to enable community representatives
to participate in the planning, execution and evaluation of research
results.
- In studies
that are carried out in the general community and that are likely
to affect particular communities of women with different kinds of
disabilities, consultation on planning, execution and evaluation
of results shall be sought through a DAWN group or other appropriate
body of women with disabilities.
- In community-based
studies, researchers shall ensure that representative cross-disability
experiences and perceptions are included.
- The convening
of advisory groups of women with disabilities to provide guidance
on the conduct of research shall not pre-empt the procedures laid
down in this document but shall supplement them.
4.
IMPLEMENTATION
- These guidelines
shall be observed in all research contracts with individual women
with disabilities, groups of women with disabilities, agencies,
organizations and communities conducting research about women with
disabilities.
- It shall be
the responsibility, in the first instance, of all researchers to
observe these guidelines conscientiously. It shall be the responsibility
of a Research Committee of DAWN to monitor the implementation of
the guidelines and to make decisions regarding their interpretation
and application.
- Where the
nature of the research make these guidelines or any part of them
inapplicable, such exception shall be reported to the DAWN Research
Committee and the exception shall be noted in any publication resulting
from the research.
(respectfully
submitted May 9, 1999 by Joan Meister)