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Advocacy in Genetics: A Teaching Guide and Workbook
Creating Change Through Advocacy
The HGP offers to provide humankind a chance, for better or worse, to control our and others’ lives. Yet without advocacy to direct good public policy, we may find ourselves in no better place. The rest of this document provides tools to help you learn how to process, prioritize, and resolve possible challenges we could face as a result of the HGP.
Advocacy and this Manual
Advocacy is acting with or on behalf of a person or a class of people to promote a change in the practices, policies, and behaviors of third parties to promote a desired goal. It is a truism of advocacy that efforts should be made in the least intrusive manner, beginning with the lowest level of staff in an organization who has the authority to make the desired decision to meet a goal. If the goal is to assist an individual, then the strategies necessary to achieve the desired outcome are "individual" focused. If the goal were to assist a class or group of people, then the advocacy strategies would be "systems" focused.
Multipartite Advocacy Model
To be effective in your advocacy effort, first you must define where your efforts would be most fruitful. Dr. Elizabeth Monroe Boggs proposed the multipartite advocacy model in the 1970s. As the parent of a son with mental retardation, Dr. Boggs was active in the protection and advocacy movement that precipitated many federal laws to aid people with disabilities, such as the Developmental Disabilities Act and the Individuals with Disabilities Educational Act. The multipartite advocacy model was created to define the various roles that each person or entity could play in protecting individuals with developmental disabilities. In Advocacy Systems for Persons with Developmental Disabilities, Dr. Boggs wrote:
The protection and advocacy of individual rights...must give attention to individual concerns, complaints, and deprivations. It is not enough to generalize about the potential harm to [a] class…or about [their] rights. If there is a need for special protection for members of any minority, there is also a need to consider minorities within that minority, right down to the minority of one. At the same time, systems or class advocacy is an attractive shortcut to increasing the cost-effectiveness of limited dollars when measured by the number of people whose lives are touched...Each type of advocacy (professional, legal, lay, and protective) may be seen as having individual and collective aspects. The proposed conceptual framework recognizes and supports both.
Components of the Multipartite Advocacy Model
The multipartite advocacy model defines four advocacy prototypes. The purpose of these prototypes is to guide individuals and groups in determining where they can realize the greatest impact for their efforts.
Lay Advocacy
Lay advocacy consists of informal and persuasive actions; it is often done outside of a formal system. The goal of lay advocacy seeks some type of social and/or political outcome.
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Individual lay advocacy efforts are most effective when done by members of an affected group and/or their parents, guardians, and friends. These efforts strive to effect change for a specific person. A parent working to improve the education their child is receiving in school is an example of individual lay advocacy.
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Systems lay advocacy efforts are most effective when done by entities organized to act with or on behalf of a group of people. These efforts strive to effect change for a group of people. AARP (American Association of Retired Persons) is an example of a systems lay advocacy entity.
Legal Advocacy
- Legal advocacy consists of formal and authoritarian actions; it is often done outside of a formal regulatory and/or service system. The goal of legal advocacy seeks some type of legislative and/or legal/class action outcome.
- Individual legal advocacy efforts are most effective when done by private attorneys, legal services, or other legal entities. These efforts strive to effect change for a specific person. A private attorney filing a lawsuit on behalf of an individual is an example of individual legal advocacy.
- Systems legal advocacy efforts are most effective when done by congress, legislatures, and legal class actions through the judicial system. These efforts strive to effect change for a group of people. The United States’ Congress’ creation of OSHA (Occupational Safety & Health Administration) is an example of systems legal advocacy.
Protective Advocacy
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