Read the Mother Courage article and the DIY scientist articles. What major ethical error did a doctor make in the Mother Courage article? How do you attribute the difference in insight between this doctor and that shown by Jill Viles?
Write your answers as a reply in the comments section
The ethical error that the doctor made in the Mother Courage article was assuming that the mother had the disease in her family somewhere and that it was pretty much dumb of her to have and keep another kid after already having one showing signs of Duchenne’s.
The difference between the doctor in Mother Courage and Jill Viles was that Jill did not just assume what and go along with what others supposed she had, she knew something was different and never gave up until she finally got the answers she was looking for.
Dr. French Anderson, who himself was duped into attending that conference in Ontario, perpetuated the lies being aired by stating that he would “cure” Duchenne Muscular Dystrophy within “eighteen months.” Dr. Anderson later went to prison, for an unrelated reason. Jill Viles desperately sought a cure, just like what happened in the Mother Courage article, but she didn’t have to rely on “crackpots” to find hope. Jill went on an intense fact-finding mission, and never gave in to rumors or crazy theories. Both articles are cautionary tales, for basically opposite reasons.
Dr. French Anderson is something else that is for sure. I agree with you. Both articles share different experiences and how they decided had hope and ambition to shift the outcome of their situations. I have always been a believer that if one is motivated enough, they can truly change the outcome or at least create a new discovery that will shift the results in a positive way. Science is forever growing and changing. There is so much we do not know and a long way to go before everything can be dissected. Just because it has not been done before, does not mean it could be in the future.
In the “Mother Courage” article, the major ethical error the neurologist made was berating Pat, the mother of the boys with Duchenne, wrongfully telling her that Duchenne runs in her family and that she should have known; that she shouldn’t have had her second son, that she could have prevented or aborted the pregnancy. There was a major difference in insight between the Doctor and that of Jill Viles. There was little incentive to specialize in the Duchenne disorder and few research dollars to do so. “There’s no hope and no help… just take them home and love them. They’re going to die”. Rather than offering any kind of help or guidance to Pat, he accepted the medical view on Duchenne and told her that this was it. Maybe had he or a loved one had any personal experience with the disorder he would have handled the situation differently. Jill, affected by an undiagnosed disorder for years, was determined to find an answer for her condition. She had a family to care for which I believe contributed to her efforts in getting a diagnosis for herself.
I am still baffled that a doctor told a mother that she should have aborted her own child. The lack of moral value as a doctor who is supposed to be passionate about helping others is beyond my comprehension.
I completely agree with your post. I am glad she never went back to that doctor and took the situation into her own hands. Then, if it wasn’t for Jill being hands on as well, Pracilla would have died in the hands of her doctor’s recklessness. Both stories were heartbreaking and inspiring at the same time.
From what I can tell, the major ethical mistake made in Mother Courage was the neurologist at Cincinnati Children’s Hospital who told Pat Furlong that there was “no hope and no help” and to essentially take her boys home to die. This seems like a highly inappropriate thing to say to a parent even if there was some truth to it. The neurologist’s attitude towards the Duchene diagnosis was to accept it for what it is and move on. In The DIY Scientist, Jill Vines has a true curiosity for researching her own condition. She seemed to genuinely want to research more and learn as much as she could instead of maybe just accepting the reality of her condition and having a “no hope and no help” mindset. If I had to take a guess at why there was such a difference in insight between the doctor in Mother Courage and Jill Vines, I would say that a jaded mindset is a possibility. I think it’s entirely plausible that the neurologist at Cincinnatiti Children’s Hospital had a jaded mindset towards the Furlong boys’ condition due to the fact that he had probably seen the effects of Duchene numerous times. Jill, on the other hand, in her quest to learn as much as possible, was relentless and never stopped pushing for answers.
In my opinion the biggest and most influential ethical mistake that the doctor made was by assuming the disease was transmitted via genetics and that the mother already knew there was someone in the family that had this disease. Another absolutely ridiculous ethical mistake made by the doctor is for telling the Mother that she could have prevented this whole situation by one not getting pregnant or if she does get pregnant aborting the baby. This statement is so crazy especially one that is made by a professional in their career to a mother who is struggling to find out what is wrong with their baby and then to be told she could have prevented it by aborting the baby is absurd especially because this was not a gene that was passed down from different generations.
The difference in insight between Jill and the doctor come from what I believe are different motives. Jill had the motive to find out why she had always been considered different and not normal. The scientist was looking to make a book on a discovery that wasn’t fully and completely true. Jill has been struggling with figuring out how she was different from anyone else and had been told a variety of different things in her lifetime. I believe Jill’s insight comes from a space of genuinely being intrigued and wanting answers as well as learning about her body as she had been growing up, so her insight comes much more from living the knowledge whereas the DIY scientist has knowledge from reading and learning not living.
The doctor in Mother Courage made a huge ethical error by pushing that it was her fault for having given her sons the disease and that she should have aborted her second son. The doctor pushed that it had to do with her familial line despite the fact of her saying it didn’t because she had already looked. The difference between the doctor and Jill Viles, is that the doctor only knew what they were taught, the muscular dystrophy was genetic so it had to be the mothers fault, whereas Jill did extensive research within her family to learn more about her disease to the point where she knew a lot more than most.
The major ethical error in the Mother Courage article was committed by the Neurologist at the Cincinnati Children’s Hospital. This doctor told Furlong that she should have known about the disease and prevented the birth of her two sons. This is terribly unethical for two main reasons. One, the doctor is making an assumption that the disorder wasn’t spontaneous (which it was, so there was no possible way of her knowing), and two, this statement does absolutely no good for anyone involved. It was simply a negative and mean thing to say to a grieving mother. The difference in insight between this doctor and Jill Viles is that Jill did not make any assumptions when it came to dealing with genetic disorders. She went through rigorous research in order to find definite answers. This is a crucial step in science, especially when dealing with situations as impactful as genetically inherited diseases.
The doctor assumed that she knew she was a carrier of disease and chose to have her second son. He also did not sympathize with her and basically told her to watch her children die as there was “nothing that could be done”. The mother (Pat) had to beg and research herself to find answers and gain progress towards finding new information on the disease. Jill Viles ended up researching her own diagnosis and learning more about genetic mutations and etc. Even though she was discouraged often and took breaks away from researching she never gave up in trying to find answers for her family. She even ended up prolonging her dad’s life despite the hospital insisting she was wrong.
In the article Mother Courage, the doctor that finally confirmed Pat Furlong’s boys diagnosis of Duchenne Muscular Dystrophy was guilty of assuming Pat knowingly passed the mutation to her boys. He failed to complete a proper history and physical on his patients. He told her that she should have prevented pregnancy or aborted her second boy. He assumed she was a carrier with a family history of Duchenne, he did not consider that she was a rare carrier that spontaneously developed the gene mutation.
In the DIY Scientist article Jill Viles was relentless in her search for a diagnosis for herself. She narrowed her symptoms to Emery-Dreifuss. Year after year she visited her physician annually and included the self diagnosis into her chart. Finally, she was validated when her genome confirmed that her father and other family members were also diagnosed with the condition. Her unwillingness to listen to medical professionals extended her father’s life and gave a name to her family’s medical condition. Jill was able to help athlete Priscilla Lopes-Schliep finally prove to others that she was clean and not doping, her muscular build was due to a genetic defect. Because of Jill’s urging, she learned that her unmonitored lipodystrophy had caused her triglycerides to be three times the normal limit. According to the article, again she steered someone else away from “medical disaster”. Jill knows that there may not be a cure for her, but she does what she does to help others like herself. she did not let supposed professional brush her off as a Web MD.
The major ethical error was assuming that the mother had the disease, and saying that both the boys have the disease and that she could have prevented any of this with abortion.
The difference between the two was that Dr. Furlong made assumptions and didn’t follow it up with science. Jill actually spent time because she knew there were more answers than just assumptions. So she followed it through and found the answers she was looking for.
In the article “Mother Courage” the major ethical error was, the Doctor in Cincinnati telling the mother (Pat) that it was her fault that the gene was passed onto her boys and that there was nothing they could do but take them home and love them because they’d die soon. Pat took it upon herself to research Duchenne’s disease to somehow try to save her boys, but when they passed Pat did not give up hope and came back fighting even harder for a cure. In the DIY Scientist article, Jill spent her own time researching Emery-Dreifuss a disease she thought she had when the doctors she saw told her she did not have it. She went as far as sending her family’s blood to Italy just to get an answer if she had the disease. When she got the results back saying she did she went on to convince others to get tested for the disease since they shared the same body traits from the disease.
In Mother Courage, many ethical errors are made in Furlong’s journey to cure her sons. Research and funding moral issues in this article. Because research is expensive and timely, doctors and funding agents don’t pay much attention to rare disease types. The doctors feel bad for patients, but they don’t want to fail and get a bad vibe from their communities.
The DIY scientist highlights Jill Viles, who takes a different approach to researching her genetics. She researches on her own time, with herself. She is able to skip the moral concerns and allow research to be conducted. Jill researches to find an answer, rather than assuming and going the extra mile with non-ethical practices, like Furlong did.
One major ethical error made by a doctor in “Mother Courage” was the doctor told the mother that it her fault that her kids had Duchenne Muscular Dystrophy, and that she could have gotten an abortion or prevented the second pregnancy, and that she just needs to go home and take care of them. I think that one major attribute that contributed to the doctor in “Mother Courage” and Jill Viles is that Jill was curious about the condition, and didn’t care what people told her. She didn’t care if other people thought that it was impossible or wasn’t useful, she was going to do it anyways.
In the article “Mother Courage,” the major ethical error that was made by the doctor was assuming that the disease was genetic within Furlong’s family. Assuming the disease was genetic and telling Furlong she could have avoided her second pregnancy to avoid this situation was wrong on the doctor’s end and very unethical.
In the article “The DIY Scientist,” Jill was aware of her condition and had the infomation to back it up, so she could get the help she needed. With this article, she did not believe what the doctors were telling her and insisted on her own research.
One major ethical error made by a doctor in the Mother Courage article was when the neurologist assumed that Furlong both carried the Duchenne gene and knew about it, without doing even the slightest bit of investigation into her family history. It was also wrong for this neurologist to have told her and her family that there was nothing they could do, because there was no hope for her sons. Jill Viles, on the other hand, put in the work to find out more about her condition. She even saved her father’s life because she had enough knowledge about her and her family’s conditions to correct doctors. The main difference, in my opinion, is the mindset. The neurologist from the Mother Courage article didn’t bother to look further into Furlong’s sons’ cases because he had such a fixed outlook on Duchenne. Conversely, Jill had an open mind. Instead of being hopeless about her situation, she was committed to finding answers to her questions.
The major ethical error made by a doctor in Cincinnati in the Mother Courage article was him telling Furlong that she “should have known about this” and that she could have “aborted the second pregnancy.” He also suggested that there was nothing she could do but take her boys home and love them until they inevitably died. This is unethical because, although the doctor is speaking on the basis of the current known scientific findings, his condescending words aim to insult Furlong. Little did he know that his words would light a fire in Furlong that would ultimately lead to her future success, no matter how Furlong got there. The insight of this doctor and that of Jill Viles is very different. Jill, like Furlong, was spoken down to in that she did not have partial lipodystrophy. Jill did not let any person, no mater their credentials or education, stop her from learning more about her own condition or from helping other people learn more about their conditions. This prolonged her father’s life and made Priscilla Lopes-Schliep aware of the dangerous amounts of fat in her blood. Jill threw herself into her research and reached out the parties she deemed fit.
The Mother Courage article explores the response of one woman, Pat Furlong, to having her two sons diagnosed with Duchenne, the “deadliest of more than forty disorders that go under the name muscular dystrophy” which occurs 1 in 3,500 live male births. As a result of this diagnosis, Furlong became a “major mover” in research into the disease. She eventually was able to get a bill passed in the Senate and the House in 2001 that President Bush signed: the Muscular Dystrophy Care Act. Millions of dollars where then available for research and trials moved from 10 to over 50. Initially, while trying to obtain a diagnosis and treatment for her two boys, a neurologist actually behaved in an unethical manner, telling her:
“You should have known about this….it is a familial disease, it’s genetic, you have it in your family.” She later learned that 1/3 of cases the mutation can occur spontaneously. The doctor added insult to injury, telling her: “You could have prevented the second pregnancy OR you could have aborted…”
Jill Viles was so confident about having “Emery-Dreifuss” that she actually wrote it on her medical chart. In 1999, she found out she had a mutation “LMNA” as well as her father, two brothers and a sister. Her self-diagnosis had been accurate. She was extremely observant, as she also recognized that she shared a mutant gene with Priscilla Lopes-Schliep. Jill noticed a medical discovery in how similar in appearance their muscles were and wondered if scientists could study both of them. The article states: “…Jill, just by investigating her own family, had learned more about the manifestations of her disease than nearly anyone in the world, and that she could see things that no one else could.” The difference between Jill and the doctor from the Mother Courage article is that the doctor, sadly, had a fixed mindset and was not inquisitive or curious. Jill was able to think outside of the box and look for connections and solutions. The doctor was shut down to new possibilities and was ready to resign himself to the Furlong boy’s fate and give up. Jill continued to keep trying to learn. Dr. Garg said, “I can understand a patient can learn more about their disease, it is a remarkable feat…”. Pat Furlong was also similar to Jill in that she did not give up and kept trying to expand her knowledge. She encouraged scientists to get more involved and invested and found ways to invite funding and resources. Her son had pointed out that his mother should want to help not just him, but also others with Duchenne. Jill also wanted to help others and reached out to contact Priscilla, so doctors could perhaps learn from both of their conditions. Thus, they reached out to aid others in the world beyond their own struggles.
In the Mother Courage article, the doctor made a major ethical error. This error was telling a mother that it’s better to get rid of her child instead of trying to find out how to fix the problem. If that happened, we would continue to have children born with Duchenne, and never know how to help them. For both articles, we see doctors who would rather sweep the problem under the rug instead of learning how to fix it. Because of this, the people who have the problems have to learn to deal with it themselves. Luckily, both Pat and Jill weren’t going to just give up. Both pushed to find the information they needed to help themselves and their loved ones.
In the article, “Mother Courage” by John Calapinto, the mother, Pat Furlong, was degraded for her sons having Duchenne muscular dystrophy (DMD). She was blamed for the boys having it because it is an X chromosome trait, and there “must” be someone in her family that has it so it is her fault for passing it down. She was then shamed for not aborting the second boy after the first. `I think it is extremely unethical behavior that the doctor preformed by degrading Furlong. As a doctor it is his duty to support, comfort, and encourage healing and strength but he did the exact opposite. He then basically signed off from the boys because they were “fatal” and there was nothing that could help them. The doctor did not fight for the boys, not did he even try to help.
In the article, “The DIY Scientist, the Olympian, and the Mutated Gene” by David Epstein, the doctors were more helpful will Jill but needed a push before being diagnosed. At first the doctors weren’t believing her that she has rare type of muscular dystrophy called Emery-Dreifuss or lipodystrophy. It took a very big leap of faith contacting a lab in Italy that was studying Emery-Dreifuss to test Jill and her family’s blood to test for the mutation. After getting confirmation from Italy did the doctors here in the US start to believe her. Jill had to work so hard and to try every single possibility that she could just to get an opportunity for a doctor to believe her, test her, and to then diagnose her.
The doctors I suppose in a way were “nicer” to Jill than they were to Furlong. I think that even the doctors with Jill were unethical for being dismissive and not believing Jill. However, they never degraded Jill or suggested that she abort her child, whereas they did to Furlong. I understand the rarity in Jills diagnosis, but with physical attributes and symptoms, the doctor should have been willing to test her. Especially before Italy diagnosed her when her dad had to get a pacemaker placed for his Emery-Dreifuss. I think the doctors that dismissed Furlong and Jill along their journey or was just blatantly unprofessional to them served them injustice by delaying treatment and opportunities for trials and education. I understand the rarity and lack of education of both Emery-Dreifuss and DMD, but the doctors should have tried. The doctors definitely served Jill and Furlong injustice.
The neurologist who told Furlong she should have aborted her children made a major ethical error by assuming Duchenne’s had run in her family. In making that statement he was placing blame on Furlong, when it was actually spontaneous mutation so its impossible she could have known.
The difference in insight between the doctor and Viles likely comes from personal experience. I think many experts in their field tend to lean towards their training and knowledge when making decisions and assumptions on certain situations, which is fair. So going off the existing knowledge that the neurologist has, it is more likely that Duchenne’s would have been in Furlongs family. I’m sure the neurologist sees people suffering in their diseases that could have been preventable and is surrounded by the harsh sides of them quite often. So for them to see Furlongs situation, their first inclination is probably to think “why didn’t you prevent this?”.
On the other hand, Viles is operating less from a scientific background and more from her personal experience. I think this makes her approach to situations a bit more unique because the stakes feel higher. She’s looking for answers for her own condition.
I think it’s just all about perspective and these situations highlight why it is so important to have diversity in all things. Yes, experts are experts but at times it can create a sort of one track mind and at times a new approach will be necessary. That approach might come from the person you’d least expect.
In the mother courage article the doctor made arguments that were not ethically sound. He told the mother she should have known about the disease she and her husband carried. The doctor told her she should have either avoided a second pregnancy or aborted her child, which is not something a doctor should respond to another person. In the DIY doctor article Jill didn’t give up and looks on her own time for diagnosis’s of her disease and generally more information. Jill wanted to learn everything she could so she could live her life instead of taking ethics from doctors into place.
In the Mother Courage article, the major ethical error was when the neurologist told her that there’s no hope and no help and just to take them home take care of them love them because there’s going to die. like he just said it without even trying to help. Another major ethical error was when the doctor told her that she could have aborted the second pregnancy. This is not a solution women can’t just keep on aborting their pregnancy. In the DIY Scientist Jill was determined to figure out what was happening to her body, she spent 25 hours a week going through books and scientific journal.
After reading both articles, I was shocked that both doctors had made an assumption based on their own opinions and observations of the rare disorder.
The doctor in “Mother Courage” had no sympathy or even the will to utilize his own knowledge to help not discourage. Based on what he knew about the disorder, he basically told the mother that there is nothing that can be done to help a patient. That they should accept it and wait for the inevitable. Instead of encouraging her or leading her in the right direction, he criticizes her for bringing her sons into this world.
The second article “DIY Scientist”, the doctor based his assumption based on the other patient’s that are athletes as well. Major mistake, because it could have killed her. It is a doctor’s duty to fully exhaust every observation or option for each patient. Even though the other patients seemed to be ok, he knew that her calves were a bit larger and that she was experiencing some different symptoms. It should be no surprise that Jill was able to understand the disorder better than him. Jill was passionate about helping others and did her diligence to understand every angle that pertains to the disorder.
Both articles tell a story bigger than the disorder. You do not have to be in medical school for 10 years to have knowledge, understanding, and the will power to fight for a good cause. Two passionate people had gone through traumatizing experiences. One was a mother that watched her sons go through it and the other was a woman who watched her dad pass away while she went through the same issues. Ambition and the will to try and help others facing their own challenges while being strong and passionate can go a lot further than doctors who don’t take their job seriously on a level that should be done.