|
Advocacy in Genetics: A Teaching Guide and Workbook
An Individual Legal Advocacy
Story and Plan
How Do We Make The Rules Fair?
Protective advocacy consists of formal and authoritarian actions; it is often done within a regulatory or service system. The goal of protective advocacy seeks standard setting, licensure, and enforcement of regulations and codes in its outcome. Systems protective advocacy efforts are most effective when done by governmental agencies such as Department of Health. These efforts strive to effect change for a group of people. Department of Health staff developing and providing oversight of standards for commercial food preparation is an example of systems protective advocacy.
Dr. Jayne Hiker was a twenty-year veteran in the State Department of Public Health. She had survived several changes in executive administration and had a reputation as an effective, no-nonsense administrator.
Dr. Hiker had been closely following the discoveries of the Human Genome Project and was concerned about the public policy implications of protecting individuals in this new era. She had been excited and pleased by the passage of the Genetic Privacy Act. Her advice to Senator Napp had been instrumental in the drafting of the legislation. Additionally, she had testified before both the state’s house and senate committees, advocating for passage of the bill. The passage of the legislation was going to allow for regulated standards for genetic research, and Dr. Hiker had been looking forward to developing those standards.A recent development was troubling, however. A lawsuit had been filed regarding the privacy of research subjects and profit-driven research. The lawsuit troubled Dr. Hiker because she hadn’t been aware that this type of research had been going on in her state. When the lawsuit was filed, the press had a field day; suddenly medical research was the suspected culprit in a myriad of medical ills.Under ordinary circumstances, the development of the rules and regulations for the new legislation would be done without public scrutiny. Staff would draft the regulations that would, in turn, be reviewed by experts participating on an advisory committee. Seldom did Dr. Hiker need to deal with public input or concern. However, this lawsuit was going to draw press attention to the scope and effectiveness of rules and regulations as a tool to protect the medical privacy of citizens.
Dr. Hiker took her responsibility as a public servant seriously; she had a duty to make sure that the rules and regulations for the Genetic Privacy Act met the letter of the law while also satisfying the public’s need to be reassured that their medical privacy was not being compromised for profit.
Steps to a Systems Protective Advocacy Plan
How could you solve Dr. Hiker’s problem?
Identify the problem – Problem Statement
What is the problem, and whose problem is it? Have you adequately assessed the problem, its impact, its solution(s), and its causes?
Desired outcome or decision – Goal Statement
Is your goal one that is needed to solve the problem? What makes your solution the best one? Have you accurately assessed the obstacles and supports to reaching your goal?
Who can make the decision to implement the goal?
Have you adequately and accurately assessed the structure of the system you will be impacting? With whom will you start implementing your goal?
Strategies
What is your plan to meet your goal? Who’s doing what, including record keeping and follow-up?
Consequences
What are the effects of actions and reactions?
Determining when it is time to escalate
Where and when will you go if your intended results are not realized?
|
