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Advocacy in Genetics: A Teaching Guide and Workbook
Watch Out! Slippery Advocacy Plan Ahead
When implementing an advocacy strategy, watch for these pitfalls:
Inability to clearly identify the focus of the advocacy effort.
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Inability to identify the strategies necessary to meet the goal.
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Fear of the possible effects of the advocacy effort, e.g., fear of public embarrassment, fear of losing, fear of being too controversial, fear of being affected personally
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Prematurely escalating the advocacy effort without starting at the least intrusive level.
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Failure to engage in conflict when necessary to protect the person or class of persons who are being aided by the advocacy effort.
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Overemphasis on militancy or conflict in the advocacy strategy.
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Using the advocacy effort to take revenge on, punish, or disable some perceived opponent.
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Responding to pressure from outsiders to advocate for unimportant issues.
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Participating in personal attacks on individuals involved on either side in the advocacy effort.
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Accepting requests to join forces that ultimately will have no productive outcome for the advocacy effort.
Safeguarding Your Advocacy Efforts
All persons responsible for implementation of the advocacy effort must:
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Believe that the action has purpose and the goal is the best solution.Be prepared to deal with the reality of "standing tall in contradiction" – that is, being informed, ready, and willing to defend the effort.
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Learn to deal with and understand the internal and external pressures that may come to bear on them, e.g., the seduction of power, money, and prestige; personal attacks on one’s integrity and character.
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Be prepared to respond; even the simplest effort may come under serious attack. Practice continual and habitual skepticism of any scheme, advocacy effort, or plan.
Remember to ask and re-ask at each level of escalation what will be won if you win and what will be lost if you win.
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Be willing to modify the goal if the price of winning or losing becomes too high.
In each of the next eight sections, fictional vignettes will illustrate families, professionals, legislators, and others dealing with "real-life" situations that involve genetic issues. These scenarios present opportunities for individual and systems lay advocacy, individual and systems legal advocacy, individual and systems protective advocacy, and individual and systems professional advocacy.
Advocacy plans, in varying degrees of detail, follow the outline described above and is personalized for each situation.
Please note:
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These stories take place in the near future, when the Human Genome Project has been completed, and even more information on the genetic roots of diseases and disabilities has been discovered.
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All of the people, organizations, and situations are fictional; any similarities to real people or situations are accidental.
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