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DisAbled Women's Network: DAWN ONTARIO

 

ETHICAL GUIDELINES
FOR RESEARCH

with
DAWN

 


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.
 


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