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Advocacy in Genetics: A Teaching Guide and Workbook
An Individual Legal Advocacy
Story and Plan
What is the Right Answer?
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. Individual professional advocacy efforts are most effective when done by entry- to mid-level staff, such as a nurse’s aide. These efforts strive to effect change for a specific person. A home health worker questioning apparent discrepancies in a physician’s medical orders for a specific client is an example of individual professional advocacy.
Judy Schott, a genetic counselor, had a short break between appointments. She sat, head in hands, momentarily overwhelmed by the demands of her profession. Ten years ago when she started out, her practice consisted in large part of pregnant women having amniocentesis to check for Down syndrome. The explosion of new genetics’ information as a result of the HGP, gene therapy for instance, had significantly increased the variability of the types of cases she now saw. And with the science being so new, it was impossible to know the long-term implications of options such as gene therapy.
The technological and scientific advances seemed to be reducing the ability of society to manage the implications of these new developments. The combination of this new knowledge and technology, and few policies, rules, or regulations to protect consumers creates a situation ripe for abuse. And Judy did not see enough dialogue to these issues on the part of her colleagues, the medical community in general, and especially the public such as elected officials and consumers.
Judy was also concerned that, despite her best efforts to stay up-to-date in her field, she did not have the resources to know everything about the newest technologies, therapies, and hypotheses. Scientific and technological advances were having a very real effect on the daily lives and everyday decisions of ordinary people – like her clients and herself. She wondered how her colleagues and professionals in the other fields of medicine and even insurance companies were coping with this situation.
Judy saw that it was time for her next appointment. She was seeing a couple, the Stewarts, whose son had been found to test positive on a MS mutation. They were trying to make a decision about whether or not to proceed with gene therapy for their son. Judy had posted a request on the genetic counseling listserv for information and learned about the existence of the MS Support Organization as well as a clinical trial starting in a few months, but she had been unable to get specifics. "Focus," she told herself. "My immediate responsibility is to these clients. I will tell them honestly what I know and also what I don’t know, and do my very best to help them understand the process of this difficult and complicated decision."
Steps to an Individual Professional Advocacy Plan
How could you solve Judy’s problem?
OK. This one is yours! What do you need to do to develop an advocacy plan? What are the steps and checks you need to keep in mind to assure that you are on the best course to resolve the problem herein presented? Good luck!
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