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Advocacy in Genetics: A Teaching Guide and Workbook
An Individual Legal Advocacy
Story and Plan
Go? Where?
Professional advocacy consists of informal and persuasive actions; it is often done within a regulatory or service system. The goal of professional advocacy seeks to assure the availability of a service as its outcome. Systems professional advocacy efforts are most effective when done by agency administrators. These efforts strive to effect change for a group of people. A nursing home administrator striving to see that her facilities go beyond the standard level of care is an example of systems professional advocacy.
Lisa Messinger was the current chairperson of a national professional association for genetic counselors. She had kept abreast of the discoveries of the Human Genome Project, and she made every effort to be aware of developments in genetics that affected her organization’s many members, both nationally and locally. She was up-to-date on her own state’s recently passed Genetic Privacy Act and its ramifications.
This morning Lisa had received a call from Dan Thomas, the Administrator of Health Regulations at the State Department of Public Health. He wanted to know what she might know about a self-imposed moratorium on in-state health research programs as a result of the pending compliance assessments in the wake of the state legislature’s imposition of genetic privacy rules and regulations. Dan said that he had a personal acquaintance that had made him aware of this situation. He wondered if Lisa would allow him to use her organization’s listserv to both provide information to and solicit information from her association’s in-state members.
He also wondered if her organization would like to co-sponsor a conference on recent advances in gene therapy as a result of the HGP. Her first impulse was to decline; she thought this would use up too much of her national organization’s resources on a local matter. Then she happened to see the note on her desk from Judy Schott asking if she were aware of any longitudinal studies on the implications of gene therapy.
It occurred to her that if Judy, a past president of this very organization, didn’t know the answers to these questions, then few others in their organization did either. Perhaps the training Dan was suggesting could be a good use of resources if it could become a model for the association’s state affiliate offices to use. They certainly had to do something to keep their membership up-to-date on these rapidly developing scientific and technological advances as well as support their mission of encouraging public dialogue about genetic issues.
She told Dan that their Information Services Committee would be meeting next week. Would he be willing to attend that meeting and help to develop a pilot project that their two agencies could co-sponsor to meet the need for timely and accurate information on genetic advances?
Steps to a Systems Professional Advocacy Plan
- How could you solve Lisa’s problem?
- 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
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