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Confidentiality and Informed Consent
Program
participants have the right to expect that all aspects of their
relationship with a Family Connection strategy or program be held
in confidence. Participants' rights need to be protected. This includes
their right to informed consent or refusal, and the right to privacy
and confidentiality. The right to confidentiality especially applies
to data collection efforts.
Informed
consent typically involves:
-
Explaining the purpose and procedures of the evaluation effort;
- Explaining
how information collected may be beneficial to families and children
if it results in program improvements;
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Identifying any risks that may result from being a part of the
evaluation;
- Indicating
the extent to which confidentiality of the information can be
maintained (e.g., use of identification numbers instead of names
on records, etc.) and identifying what precautions will be taken
to insure confidentiality;
For
example, a mandated reporter may be required to report child
abuse or neglect to the proper authorities;therefore, confidentiality
cannot be promised in this case. Or in the case of focus groups,
the focus group leader may promise to keep the results confidential
but cannot promise that others participating in the focus group
will maintain confidentiality.
-
Encouraging the family/individual to ask questions so that they
understand what is required of them and any potential risks or
benefits and providing them with the name and phone number of
a person who can answer questions later; and
- Assuring
the family/individual that they DO NOT have to provide this information
if they do not want to and that failure to participate will in
no way jeopardize their ability to participate in current or future
programs.
Written
evidence of consent from individuals is usually required. Parents
typically must approve their children's participation. Participants'
written permission is required if you plan to use specific statements
that can potentially be attributed to them or to share information
obtained from videotaping or photographing them for marketing, training
or evaluation purposes (e.g., developing a promotional brochure,
showing the video to train staff or giving a presentation about
the program at a conference).
Sample
Consent Form (from United Way)
For
more information about research involving Human Subjects, visit
the University
of Georgia Human Subjects Web site.
Frequently
Asked Questions
Visit FAQs: Confidentiality
and Informed Consent to learn more details and find answers
to collaboratives' frequently asked questions about this topic.
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