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Advocacy in Genetics: A Teaching Guide and Workbook
A Systems Legal Advocacy Story and Plan
How Much Is Private?
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. Systems legal advocacy efforts are most effective when done by congress, legislatures, and legal class actions through the judicial system. These efforts strive to affect change for a group of people. The United States’ Congress’ creation of OSHA is an example of systems legal advocacy.
Senator Diane Napp, a two-term state senator, relished the opportunity her job gave her to affect real and lasting change. Senator Napp was known as a fiscal conservative and an outspoken opponent of unchecked growth. She was also considered a "people person" and was known to never ignore a constituent’s request for help. In response to just such a call for help, Senator Napp began a journey into the public policy arena for genetics.
The legislative session had just ended, and Senator Diane Napp was looking forward to just being Diane Napp, soccer mom, for a few weeks. However, a phone call from a constituent changed her plans.
Denise (Deni) Patrick explained that her brother had been diagnosed as a child with Fragile X Syndrome. Deni explained that Fragile X Syndrome is an inherited genetic condition associated with mental retardation, resulting from an alteration on the long arm of the X chromosome. Deni loved her brother. However, as she had watched her family struggle with the demands of his condition, she knew more than most the toll it could take on an entire family. While listening, Senator Napp guessed that Ms. Patrick must have been calling in response to Senator Napp’s opposition to a plan presented in the just-completed legislative session that would have increased funds available for long-term services for people with developmental disabilities. Senator Napp had opposed the legislation based upon her contention that the monies already available could be more effectively managed.
But Deni surprised her. Her call was not about that at all. Deni asked Senator Napp if she knew anything about genetic predictive testing and gene therapy. Deni had been invited to participate in a research study whose participants may carry the gene for Fragile X. The research program would ensure complete confidentiality and would provide free medical testing and other services for study participants as well as pay a stipend to defray any costs incurred as a result of participating in the study. Deni was worried about the assurance of confidentiality. How could confidentiality protect her and/or her children if she were identified as someone possibly carrying the gene for Fragile X? She was intrigued by the research program’s goals.
Deni asked Senator Napp if she could help her find any existing laws regarding genetic privacy as it related to genetic predictive, and to help her to understand what protections they might offer her. Senator Napp agreed to help.
Using the Internet as a first step to researching this question, Senator Napp found several laws related to genetics. Then Senator Napp called Dr. Jayne Hiker, a high-level administrator at the State Department of Public Health, to pick her brain. Once her research was completed, Senator Napp concluded that the complete statutory protection that Deni sought in regard to the privacy of her genetic information simply didn’t exist in their state, and she resolved to try to do something about this lack of protection. She called Deni to discuss her findings.
Steps to a Systems Legal Advocacy Plan
How could you solve Deni and Senator Napp’s problem?
Identify the problem – Problem Statement
Is the problem lack of information, lack of laws, lack of policies, lack of research on Fragile X, etc.? Who has the problem: Deni, her family, other Fragile X families, Senator Napp? Who or what causes the problem, and what would solve the problem?
Desired outcome or decision – Goal Statement
What is the best outcome to this problem? Is another solution acceptable if not ideal? Are any agencies or institutions affected by the desired outcome? What policies, regulations or laws support or do not support the desired outcome?
Who can make the decision to implement the goal?
Can Diane Napp affect the proposed change, or must the state Senate or even Congress? Will resources other than Diane Napp be needed to reach the goal?
Strategies
Exactly how are you going to get done what you think needs to be? What will your role be? Diane Napp’s role? A Fragile X support organization’s role? The state legislature’s role? Who will be the gatekeeper of information and the director of actions? Are there compromises that could or must be made to reach the goal?
Consequences
What will be won and lost at each step of the process? When do the losses become greater than the gains, and what will be done as a result of this imbalance?
Determining when it is time to escalate
What immediacy do you attach to this situation? What timelines arenecessary, and what are the consequences if timelines are not met?
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