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Advocacy in Genetics: A Teaching Guide and Workbook
Steps to a Systems Lay
Advocacy Plan
How could you solve Tim’s problem?
Identify the problem - Problem Statement
A national consumer support and advocacy agency for multiple sclerosis is being asked for information and policies that it does not have. Its constituency needs answers, and the national office doesn’t have those answers. The implications of the Human Genome Project for multiple sclerosis were vaster than the agency was prepared to address. How can the agency accomplish what needs to be done?
Desired outcome or decision - Goal Statement
The agency needs to identify the issues that have grown out of the HGP which affect its constituency, and to develop educational materials, policies, and an action plan to address those issues.
Who can make the decision to implement the goal?
The agency’s board of directors, staff, and consultants will be involved in identifying issues and formulating a plan. The executive director will be responsible for the refinement and implementation of the plan.
Strategies
The board of directors, staff, and consultants are involved in defining the issues and formulating a plan of action. Reports and briefs document issues and needs; the executive director’s plan details actions to meet identified goals. As the plan unfolds, the executive director will assess the need for compromise.
Consequences
The agency will need to be diligent about monitoring the effects of its actions. "Wins" and "losses" are rarely exclusively one or the other.
Determining when it is time to escalate
Briefs and reports document the necessity to develop both state and national legislation on privacy, accessibility, and fiscal concerns resulting from issues raised by the Human Genome Project. The agency’s affiliate network will be empowered to affect this escalation at the state level, while the resources of the agency’s board of directors, staff, and consultants will pool to affect the desired outcome nationally.
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