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Advocacy in Genetics: A Teaching Guide and Workbook
An Individual Legal Advocacy
Story and Plan
Privacy Belongs To Whom?
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.
Damian Brown, a successful, Harvard-educated attorney practiced in the arena of medical malpractice and insurance fraud. He occasionally took pro bono cases referred to him by the state bar association. Today he is meeting with a potential client referred to him through that process.
Jane and Gene Solip are working class folks. Jane is a stay-at-home mom and Gene is a janitor. Jane and Gene have three children, two girls and a boy. When their son, Billy, was three, he was diagnosed with terminal cancer. Billy was diagnosed and treated at the local children’s hospital. The Solips felt fortunate that Billy’s doctor was a prominent and well-respected local physician, Dr. John Hartmann. Dr. Hartmann had led a research project that developed a state-of-the-art experimental treatment for children with cancer. Dr. Hartmann was also a partner in a private research company called DNA Crossroads. DNA Crossroads would sometimes absorb the cost of treatment for indigent families.
The Solips had no health insurance, so when Dr. Hartmann proposed that they consider the opportunities that DNA Crossroads could offer their son – free state-of-the-art experimental cancer treatment that might cure Billy’s otherwise terminal cancer – they jumped at the chance. Dr. Hartmann did not tell the Solips that he was one of the owners of DNA Crossroads. Dr. Hartmann was eager to promote his treatment regimen that, if successful, could be patented by DNA Crossroads as a cure for certain types of cancer. The Solips would do anything to cure their son.
Billy’s treatment was vigorous and initially appeared to be successful. The little boy appeared to be recovering when, suddenly, his condition deteriorated and it was necessary to put him on life support. Dr. Hartmann was out of town when the crisis occurred, so another team of doctors treated Billy. During this crisis, the Solips were asked detailed questions about Billy’s treatment, and there were some subtle indications that some of the physicians treating Billy had misgivings about the course of his treatment. After a week’s struggle, the little boy died; the cause of death was cancer. A few weeks later the Solips met with Dr. Hartmann to discuss some of the criticisms they had heard regarding Billy’s treatment. Dr. Hartmann seemed genuinely anguished about their son’s death. He told them that experimental therapies are always risky, and Billy’s cancer had been terminal. He said the grumbling they had heard was, no doubt, a result of the frustration the doctors had felt over being unable to save him.
A year later the Solips read in the paper that Dr. Hartmann’s company, DNA Crossroads, was applying for a patent for a gene therapy treatment for cancer. The Solips’ initial reaction to the article was sadness that this hadn’t come in time to save their son. Dr. Hartmann was quoted as saying he was excited to be part of the cure for this dreaded disease. He was in the process of initiating a cooperative treatment agreement with numerous cancer centers around the country. The article went on to say that of 200 patients who had received the experimental treatment, only one had died due to a "treatment anomaly." The Solips wondered if this individual could be their son and, if so, what exactly was meant by a "treatment anomaly." They remembered the muttered misgivings about Billy’s treatment that they’d heard during that final crisis. They began to wonder: Had their son been treated appropriately, or had he been a victim of medical malpractice? They called the state bar association the next day for advice and had been referred to Damian Brown.
Steps to An Individual Legal Advocacy Plan
How could you solve Jane and Gene’s problem?
Identify the Problem – Problem Statement
What is the problem and who has it? Is the problem Damian Brown’s, Jane and Gene Solip’s, or Dr. Hartmann’s? While it may be that ultimately all of these people have a problem, within the parameters of, in this case, legal advocacy, who has the problem? What causes the problem, and would eradicating that source be a solution? Does the problem affect an individual only or does it have a broader implication?
Desired outcome or decision – Goal Statement
What is needed for resolution to the problem? While Billy had a terminal disease, was his quality of life or death different/earlier because of the drug trial? Are there good, better, best solutions? What makes a resolution good, better or best? Who outside of the immediate family is impacted by the resolution? What supports your decision about the best resolution, a policy, regulation, law, etc.?
Who can make the decision to implement the goal?
What is the structure of the system you’re going to impact? Will you affect DNA Crossroads only? Is your first contact the lowest-level person within that company? How does Dr. Hartmann fit into your plan?
Strategies
How will you reach the goal you’ve identified? Is there a role for the Solips, Damian Brown, and Dr. Hartmann? Have you identified timelines for the work to be accomplished? Who will keep records of who is doing what with whom when? Have you identified that good, better, best spectrum so you can consider compromises to your identified goal? What are your legal rights regarding your goal, and does your goal compromise anyone else’s legal rights? Specifically, do your legal rights compromise Dr. Hartmann’s or DNA Crossroads’?
Consequences
Remember that for everything we "win", we may also "lose." As you look and work toward your goal, are the costs greater than the benefits so that you need to change your strategy and/or goal?
Determining when it is time to escalate
The problem is no longer life threatening; Billy’s life is lost. Immediacy, then, is less an issue. Rather, what timelines will you set for actions to be complete prior to escalating? Are those reasonable timelines and does everyone know them? Does everyone know of your intent to escalate if timelines are not met?
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