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Table of Contents
The
Human Genome Project And The Genetics Behind The Project: What Does It
All Mean?
Genetics:
The Basics
Chromosomes
Ethical,
Legal, and Social Issues Related to the Human Genome Project
- Creating Change
Through Advocacy
- Advocacy
and this Manual
- Multipartite
Advocacy Model
- Components
of the Multipartite
- Advocacy Model
- Lay
Advocacy
- Legal
Advocacy
- Protective Advocacy
- Professional
Advocacy
- Where
Do I Fit?
-
Advocacy
Plan
-
Steps
to an Advocacy Plan
Identify
the problem – Problem Statement
- Desired
outcome or decision - Goal Statement
Who
can make the decision to implement the goal?
Strategies
Consequences
Determining
when it is time to escalate
Watch Out! Slippery
Advocacy Plan Ahead: Safeguarding
Your Advocacy Efforts
A Systems Lay
Advocacy Story and Plan: Where
Do We Belong?
Steps
to a Systems Lay Advocacy Plan:
How
could you solve Tim’s problem?
An Individual Lay
Advocacy Story and Plan
Righting
A Wrong?
Steps
to an Individual Lay Advocacy Plan
How
could you solve Betty and Bob’s Problem?
A Systems Legal
Advocacy Story and Plan
How
Much Is Private?
Steps
to a Systems Legal Advocacy Plan
How
could you solve Deni and Senator Napp’s problem?
An Individual Legal
Advocacy Story and Plan
Privacy
Belongs To Whom?
Steps
to An Individual Legal Advocacy Plan
How
could you solve Jane and Gene’s problem?
A Systems
Protective Advocacy Story and Plan
How
Do We Make The Rules Fair?
Steps
to a Systems Protective Advocacy Plan
How
could you solve Dr. Hiker’s problem?
An Individual
Protective Advocacy Story and Plan
Ready,
Set, Go?
Steps
to an Individual Protective Advocacy Plan
How
could you solve Dan’s problem?
A Systems
Professional Advocacy Story and Plan
Go?
Where?
Steps
to a Systems Professional Advocacy Plan
How
could you solve Lisa’s problem?
An Individual
Professional Advocacy Story and Plan
What
is the Right Answer?
Steps
to an Individual Professional Advocacy Plan
How
could you solve Judy’s problem?
Supplemental
Information
A.
Population Served
B.
Availability Of Services and Accessibility
C.
Clinical Requirements
Medical
history / background information
Laboratory
tests and physical exam
Counseling
and education
Specific
Situations
Pregnancies
Newborns
Young
Children
Adolescents
and Adults
D.
Follow-up Requirements
E.
Genetics Services Providers / Personnel Requirements
F.
Nongeneticist Health Care Providers
G.
The System Requirements
H.
Confidentiality and Ethical Issues
I.
Cost Coverage / Funding
About the Mountain States
Genetics Network
Consumer Issues Committee
The Mountain States Genetics Network (MSGN)
was established in 1984 and was funded by a grant (#MCJ-081002-02) from the U.S.
Department of Health and Human Services, Division of Maternal and Child Health,
Genetic Diseases Services Branch.
The MoStGeNe Consumer Issues Committee is one
of several committees functioning under the MoStGeNe umbrella. Its members bring
consumer perspectives to the network's activities, facilitate consumer members’
work within the network, and provide educational programs for consumers about
genetics, new technologies, and legislative advocacy.
COMMITTEE MEMBERS
Participating in this
project
Ginger Dodge
Joyce Dolcourt
Susan Duffy Doris Husted
Rod Slaght
Vickie Venne
Want to Know More?
To obtain more information about
this committee and/or this project, please Email us at
joycehooker@mostgene.org
Have We Gotten Too Big for Our Genes? And How Do We Get a
Better Fit? is not copyrighted. Readers are free to
duplicate all or parts of its contents. Have We Gotten Too Big for Our Genes?
And How Do We Get a Better Fit? is published for persons interested in
applying advocacy to situations, which may result because of advances in
genetics. In accordance with accepted publication standards, we request
acknowledgement in print of any article reproduced in another publication. The
views expressed in the publication do not necessarily reflect local, state, or
federal policy.
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