PolitiKids Podcast Episode 3 is up!
The day I went into the student dean’s office at my medical school to tell her I was pregnant, I felt like I needed to apologize before even walking through the door. When I told her I was not only pregnant, but pregnant with twins, her response to me was, “And who’s going to take care of these babies?” I was 35 years old at the time and married. My husband and I had been desperately trying to get pregnant for two and a half years. After one abandoned cycle of IUI (intrauterine insemination), we tried IVF (in vitro fertilization). We put two embryos in, hoping to get one viable pregnancy. When that six-week intravaginal ultrasound showed us not just one, but two tiny specks on my uterus, my first thought was not, “Oh my god, we did it!” It was, “Shit, there goes my career.”
Part of me always knew that if my husband and I were successful in our quest to start a family, my career would probably suffer. But what was I to do? Not pursue an interesting and challenging career in medicine? Not pursue having a child? In the end, I figured it would all work itself out.
When I found out I was pregnant with twins, my first thought was, “Shit, there goes my career.”
Alas, I had no idea what types of barriers existed for women who wanted to have it all. Even if one can overcome the external barriers, there are the internal ones—stress, pain, being pushed to your breaking point, not to mention having to tend to the needs of small humans. But certainly, I assured myself, since women have been procreating since the dawn of humankind, and fighting for equal rights for over a hundred years, our 21st century society would have some sort of ‘safeties’ put in place to help procreators achieve their potential outside the procreative role. I never saw my mother struggle with caring for me and my older brother. Perhaps she was lucky, perhaps she and my father found a way around whatever flaws may have existed in the system back in the 1970s and ‘80s. My mother was a school teacher who had summers off and my father was a college professor who had a pretty flexible schedule. Somehow I would be able to work out my life so I could be a successful career woman and a successful mom.
Pregnancy meant a lot more to me than just bringing new life into the world, a lot more, even, than changing the meaning of my existence. It felt like a way to unbreak a broken circle. I had lost my mother a few years earlier by way of a short and unexpected battle with a very rare cancer at a point in time when I felt our mother/daughter relationship was evolving, maturing. It was a point at which I could more fully understand her journey and offer her support the way she had always supported me. She was newly retired and pursuing her love of music, taking a leap to be a pianist for an amateur string quartet. At age 64, she was embarking on a new and exciting phase of her life. This gave me so much hope and joy to be able to see her do this. Unfortunately, she didn’t even get to go to the first rehearsal. It was her illness, subsequent medical mismanagement, and death that propelled me to go to medical school at that point in my life.
I had lost my mother a few years earlier by way of a short and unexpected battle with a very rare cancer…
So when the student dean, the faculty member that was supposed to be my advocate at the medical school, questioned by ability to care for the lives that were growing inside me, the lives that I had just that morning while sitting in immunology class felt to start gurgling in my belly, I was dumbfounded. But her reaction was not altogether unexpected.
Even though more than 50% of today’s medical students are women, medicine is still very much a man’s profession. From the portraits of old, white men that adorn the hallways of hospitals and medical schools, to the financial cost/benefit analysis of whether a given assay or treatment is worth it, to the demands of the three to seven years of post-graduate employment/training (residency) that is required to obtain a license to legally practice medicine, it’s a man’s, man’s, man’s world. In fact, the resident physician was originally called a house physician and was traditionally a young, single male who actually lived in the hospital and could be called upon day or night to tend to whatever problem was at hand. But today, with over half the pool of resident physicians being women of child-bearing age, this outdated system is presenting problems.
There is very little leniency for taking random days off when your child has a fever. In fact, at some of the hospitals where I rotated, there was a system whereby if a resident takes one day off, she would then owe two days back in return.
True, there are now duty hours restrictions in place, limiting the maximum average number of hours worked per week by a resident physician to 80 hours, with an average of one day off. It requires clarification, though, that an average of 80 hours could mean 90 hours worked one week and 70 the next, and the average of one day off could mean working for 12 straight days with two days off. There is very little leniency for taking random days off when your child has a fever. In fact, at some of the hospitals where I rotated, there was a system whereby if a resident takes one day off, she would then owe two days back in return. Not very mommy-friendly.
After that meeting with the student dean, I continued on in medical school through the rest of my pregnancy, which lasted only 7 months ending in an emergency C-section and a two-and-a-half week NICU stay for my babies. During that time, when I too was convalescing (I did just have major abdominal surgery), I didn’t stop studying.
I returned to the classroom for the next round of exams.
Navigating the infant and early childhood care system in America is not an easy task. Due to distance from family and the death of my mother, I had no support system and I had to figure it out myself. The first thing I learned was that daycare facilities do not accept infants under 16 weeks of age. This makes perfect sense. I mean, who is better at caring for these precious, fragile lifeforms than their parents? So I asked my husband to take advantage of his Fortune 10 company’s parental leave benefit.
He stared blankly at me.
“Doesn’t your job offer leave for new fathers?” I asked.
Turns out, there was no such benefit. There was a benefit for a reduced-pay leave for new mothers. But nothing for fathers—something my husband would have jumped at, not only to bond with his new babies, but also to relieve some of the burden on me. The fact that there was no comprehensive parental leave in such a large corporation was astounding to me. At that exact moment I came to the painful realization that just because I was a woman, I was the one who was supposed to sacrifice my career. And even though the Family Medical Leave Act was law, it does not provide paid leave. It just guarantees that a job will still be there when you return to work. Unpaid leave was not an option for us because I was a student earning no money. We all still wanted to eat.
“Doesn’t your job offer leave for new fathers?” I asked.
So I called a nanny service.
There’s nothing in this world that can describe the feeling of welcoming someone you’ve never met into your home and leaving your newborn babies with them. I felt numb and terrified and grateful and detached from my body and confused and a little sick to my stomach.
During that meeting with the student dean, instead of being passive-aggressively upbraided for fucking (pardon my language) everything up by daring to procreate, I should have been counseled to take the time off I needed to care for my health, my children’s health, and (most relevant to the dean’s position) the health of my career. The good news is, I passed all my exams, including Step 1 of the official medical licensing exam. But merely passing the Step 1 exam is not the point; the score you get determines your career options, a higher score increases your likelihood of ‘matching’ to a top residency program or a preferred specialty. My score was good, but I could have done much better. I was lactating, coordinating childcare, studying like crazy, and lookin’ good while I was at it. I felt so much pressure to prove to everyone that this life change didn’t faze me one bit, to prove that I didn’t need to take a break.
I continued moving on through clinical rotations while also navigating the childcare system, trying to find a daycare that actually complied with immunization requirements, didn’t change diapers on the same surface used for food prep, and didn’t leave me with a sense of existential dread at the thought of leaving my two babies with them. The cost: $680 a week, and that was with the discount of being affiliated with a nearby hospital. I still remember the feeling—like watching a treasured balloon float away after you accidentally let the string slip through your childhood fingers—of handing over my credit card and watching more than $1300 of money we didn’t have get swiped away every two weeks.
For a year and a half after my twins were born I worked my ass off through rotation after rotation—neurology, pediatrics, internal medicine, surgery—performing as well as (some of my evaluations say better than) my peers, when I finally hit my breaking point. A combination of unbearable neck pain and exhaustion propelled me to swallow my pride and take a six-month leave of absence.
Apparently lots of parents depend on their jobs for income (who knew?) and can’t afford to take time off when their children get sick, so said sick children, along with their infectious diseases, invariably get dropped off at daycare.
Upon my return to clinical clerkships I was confronted with the same childcare issues. Really, just as my student dean asked, who is going to take care of these babies? We made the decision to put them in a local daycare. And that’s when they started getting sick. Apparently lots of parents depend on their jobs for income (who knew?) and can’t afford to take time off when their children get sick, so said sick children, along with their infectious diseases, invariably get dropped off at daycare. Six overnight hospitalizations for pneumonia and one negative cystic fibrosis test later, we decided we had better go back to having someone come to the house to care for the children.
As a mother in the medical education system, one experience stood out to me that still irks me to this day. During my Obstetrics and Gynecology rotation, there were 15 overnight shifts, but 8 students. As a way of sorting who would be the lucky student who had to put in only one overnight shift, the program director thought it would be fair to toss straws onto the table and have all the students race to pick up the short straw. The person with the short straw would be exempt from the overnight shift.
I did not get the short straw.
I met with the program director to ask, since two overnights weren’t required of all students in that clerkship, if I could be excused from one of the two overnight shifts assigned to me. This was the OB/GYN rotation and I explained to him that after fertility treatments, a high-risk twin pregnancy, and an emergency C-section, I had quite a bit of experience in the field that other students were lacking. Certainly missing one night shift that wasn’t required of all students wouldn’t terribly impact my knowledge base. I further explained to him how precious that extra time would be for me to be able to care for my family. In my mind, I made a cogent and convincing argument. He looked up at me from his desk and said, “Well, maybe your husband needs to step it up at home a little more.”
I couldn’t hold it together anymore. Tears burst forth through my tired eyes as I proceeded to ask this man how dare he insult my husband. He had no idea how hard the father of my children worked for our family. Furthermore, with his words, this obstetrician/gynecologist who is responsible for training future OB/GYNs dismissed my experience as a female patient who was under the care of an OB/GYN. With this zeitgeist among doctors tasked to care for women (believe me this obstetrician was not the only professor I encountered who exhibited this ethos), it’s no wonder my mother’s case was mismanaged.
It’s no secret that when a woman goes to the doctor, her symptoms are not treated as seriously as a man’s. An official medical diagnosis of hysteria (fr. hystera womb/uterus) for all manner of ailments affecting women was not uncommon at the turn of the 20th century. The cure? Genital massage until the woman experienced a hysterical paroxysm (aka an orgasm)… but I digress. It wasn’t until 1980 that the diagnosis of mental hysteria was removed from the DSM, the psychiatrist’s bible. Even as a teenager, when I consulted the medical reference book my family kept in our library looking for the cure for my menstrual cramps, it stated that menstrual cramps were the result of a woman being sexually unsatisfied.
Devaluing of women’s experience pervades the medical system.
At the turn of the 21st century, I saw my own mother’s illness characterized as a woman’s issue, instead of as part of a syndrome that would eventually take her life. She experienced hot flashes that persisted well past the age of menopause. Even so, the hot flashes were attributed to menopause instead of being investigated further. Those hot flashes, it turns out, were produced by serotonin-secreting tumors that had taken over her liver. By the time this was discovered, it was too late.
Devaluing of women’s experience pervades the medical system. From female patients to female medical trainees and beyond. Even in light of the fact that numerous recent studies have shown that female physicians provide better care than their male counterparts. But the devaluing of women’s experience in medicine does not occur in isolation. Rather, it is a symptom of a disease that has run rampant in society at large.
Perhaps the disease will run its course, easing as the body politic heals itself. Perhaps, as more and more young people grow up inoculated against the effects of sexism, we will see a woman’s worth and all her procreative power honored. Until then, we must treat the symptoms and continue working toward a cure.
And who’s going to take care of these babies?
I graduated medical school six months after the rest of my class did. I was offered two resident physician positions at two different hospitals in the years that followed. I turned them both down.
On my 33rd birthday, just three months before she died, my mother gave me a card that said she hoped I got everything I deserved from this world. All I think I deserve is a little respect—for the knowledge my experience and education have given me, for my time which grows ever more valuable, and for my power as a mother to shape future society into one that will give my daughter everything she deserves in this world.
- Review Nuremberg Code
- Explore hypothetical situation concerning unethical medical experimentation
- Briefly discuss real-life Nazi medical experimentation
- Discuss perspectives on what to do with unethically obtained data
Above: Photo of Karl Brandt, personal physician to Hitler, active in SS, Commissioner for Health and Sanitation. After WWII, he was tried at Nuremberg and found guilty of war crimes, crimes against humanity, and membership of a criminal organization. He was executed by hanging in 1948.
The Nuremberg Code
The Nuremberg Code came about after the 1947 Nuremberg “Doctors’ Trial” in which several Nazi physicians who performed cruel experiments on unwitting human subjects were tried. The Nuremberg Code comprises 10 directives for human experimentation and is still relevant today.
Nuremberg Code, briefly stated:
- Obtain voluntary consent of all human subjects
- Perform experiments that will benefit society and are not unnecessary
- Expect that the results will give good reason for the experiment
- Avoid suffering by or injury to the subjects
- Do not perform experiment if there is any belief that death or disabling injury will occur
- Make sure the risk taken by the subject does not surpass the importance of the results of the experiment
- Protect the subjects from injury or death
- Ensure that only “scientifically qualified persons” are performing the experiments
- Cease the experiment if the subject feels physically or mentally pushed to the limit
- Expect that lead scientist will call the experiment to an end if he or she believes there is a danger to the subject
These directives for human experimentation seem simple and reasonable. However, misguided researchers have, in the past, and may, in the future, stray from these guidelines. The question, then, is what do we do with data gleaned from unethical experimentation? Especially if the data are valuable to the health and well-being of our patients.
This is a very difficult question to tackle. In order to tackle this question, I will employ a technique that has been employed by teachers since Socrates. We will explore a hypothetical situation that deals with the topic at hand.
Although our particular hypothetical situation is from popular culture, it is not meant to trivialize the issue. Rather, this hypothetical is meant as a vehicle for serious thought and exploration. Our hypothetical situation comes from the television show Star Trek: Voyager, episode 8 from season 5 entitled “Nothing Human.”
Here is a brief summary of the episode: The ship’s chief engineer Lt. B’Elanna Torres finds herself in a situation in which an alien being has attached itself to her, piercing her vital organs, in an attempt to keep itself alive while sapping the life from her. Lt. Torres will die if the alien is not removed properly. Unfortunately, the ship’s holographic doctor has no idea how to remove the alien and save B’Elanna’s life. The doctor says he needs to consult an expert in alien biology, an exobiologist. A plan is construed to create a hologram of Dr. Crell Moset, a Cardassian physician who is a leader in the field of exobiology.
Dr. Crell Moset also cured the fictional, but deadly, fostossa virus. The fact that Dr. Crell Moset is of a race called the Cardassians is of some consequence, especially to a crew member whose planet was occupied by the Cardassians during ‘the war.’ When that crew member expresses concern, the ship’s doctor states that he doesn’t care if Moset was the “nastiest man who ever lived,” as long as he can help save Torres’ life.
A conflict arises when Ensign Tabor, the Bajoran officer whose planet was occupied by the Cardassians, recognizes Dr. Moset. He is horrified, explaining:
“I can still remember the sounds his instruments made; the screams of his patients; the smell of chemicals and dead flesh. He operated on my grandfather, exposed his internal organs to nadion radiation. It took six days for him to die.”
The following conversation between Ensign Tabor and the Doctor reveals the more about Crell Moset’s experimentation on unwitting subjects:
Ensign Tabor: He blinded people so he could study how they adapted; exposed them to polytrinic acid just to see how long it would take for their skin to heal!
Doctor: Ensign, the man you’re accusing cured the fostossa virus. He stopped an epidemic that killed thousands of Bajorans!
Ensign: By infecting hundreds of people. So that he could experiment with different treatments; old, helpless people, like my grandfather, because he considered their lives worthless!
Doctor: How do you know this?
Ensign: Everybody knew.
So, although yielding useful results, Dr. Moset employed unethical methods in his research.
The dilemma we are faced with is now two-fold:
- Is it moral to use Dr. Moset’s knowledge, which was gained through the blood of innocents, to help save a crew member’s life?
- Would using the knowledge set a dangerous precedent for the future, thereby condoning such cruel research methods?
Ensign Tabor, after learning that Dr. Moset enjoys a position as the chair of exobiology at a university, offers this as a solution to the aforementioned dilemma:
“We may not be able to do anything about the real Moset, Commander, but the program should be destroyed. Every trace of that man’s research should be deleted from the database.”
The commanding officers also struggle with the dilemma:
Lt. Tuvok: If the Doctor uses knowledge that Moset gained through his experiments, we would be validating his methods, inviting further unethical research.
First Officer Chakotay: We’d be setting a terrible precedent.
Lt. Paris: We’re in the middle of the Delta Quadrant, who would know?
Lt. Tuvok: We would know.
Lt. Paris: Fine. Let’s just deactivate the evil hologram and let B’Elanna die. At least we’d have our morals intact.
It is interesting to note that Tuvok, who is a Vulcan (an exemplar of logical thinking) posits that validating the methods of an unethical researcher may invite further unethical research.
For the captain of the ship, there is no question that Lt. Torres’ life should be saved, so she orders it done. But, a question still persists: what should be done with the file containing the information from Moset’s research after the current situation is resolved? Should it be deleted? Or, should it be kept for future medical emergencies?
Nazi Experimentation on Human Subjects in Concentration Camps
Unfortunately, such a situation is not merely a hypothetical. The Nazis performed many gruesome and inhumane medical experiments on inhabitants of concentration camps. Before we find out how the characters in our hypothetical situation resolve this ethical dilemma, I would like to briefly explore some of types of Nazi experiments that took place on human subjects.
Theses experiments included:
- Freezing experiments in which inmates were submerged in tanks of ice water and left to shiver to death to see how long a human could survive in freezing waters.
- High altitude experiments in which subjects were put in decompression chambers to simulate high altitudes, then their living brains were dissected to see the air bubbles that would form in subarachnoid vessels.
- Sulfanilamide experiments in which wounds were inflicted on prisoners and infected with bacteria, then treated with the new drug (sulfanilamide) to see how well it would work to fight the infections.
- Sterilization experiments and artificial insemination experiments.
- Tuberculosis experiments in which axillary lymph glands were removed from Jewish children to see if there were natural immunities to the disease from which a vaccine could be developed.
Surprisingly, or perhaps not so for some, many modern scientific journal articles cite the data produced in the types of experiments listed above. One of the authors of the book Hypothermia Frostbite and other Cold Injuries uses Nazi data in his research. Also, the survival suit, which you may have seen on the TV show “The Deadliest Catch,” the suit that allows people to survive in freezing cold waters, came about as a result of using Nazi data.
Let us take into consideration the following quote from Kristine Moe from the essay “Should the Nazi Research Data be Cited?”: “Nor, however, should we let the inhumanity of such experiments blind us to the possibility that some ‘good’ may be salvaged from the ashes.”
We are left puzzling about what to do with this data gleaned with unethical medical experimentation. If we use it, is it setting a terrible precedent for the future? If we don’t use it, are we just letting bad things happen without salvaging any good from it?
We do have this question: What should the medical community do with data from research that was performed in a way that did not respect the rights of human beings as was the case with Nazi human experimentation?
The Doctor’s Dilemma
The holographic doctor in our hypothetical situation also struggles with this dilemma:
Doctor (to holographic Moset): Your program, despite all it’s brilliance, is based on his work. He infected patients, exposed them to polytrinic acid, mutilated their living bodies. And now we’re reaping the benefits of those experiments. Medically, ethically, it’s wrong.
Moset: What do you suggest we do about it?
Doctor: I’m not sure. We may have to delete your program.
Moset’s holographic image then argues that such is the price one pays to further medical science. He then makes the point that much of the medical data banks would have to be erased due to questionable ethics in research methods. And argues further the ever-popular idea that ethics are relative.
The doctor responds that sometimes the price is too high. Just because Moset cured a deadly virus that would have killed many more if gone unchecked, that does not justify inhumanely using people in his experiments. Interestingly, the decision of whether or not keep the file containing the holographic image of Dr. Crel Moset (and all of the data that goes along with that) is left up to the ship’s Doctor:
Crell Moset: You can erase my program Doctor, but you can never change the fact that you’ve already used some of my research. Where was your conscience when B’Elanna was dying on that table? Ethics, morality, conscience. Funny how they all go out the airlock when we need something. Are you and I really so different?
Doctor: Computer, delete medical consultant program and all related files.
The Doctor makes the decision to wipe the files of Moset out of the computer’s memory banks.
In real life, there are opposing views of what to do with research involving unethical experimentation. Brigadier General Telford Taylor, chief counsel for the prosecution during the Nuremberg “Doctors’ Trial,” felt the wisdom gleaned from the Nazi experiments should not be utilized. In his opening statement, he asserted, “These experiments revealed nothing which civilized medicine can use.”
On the other hand, John S Hayward, from the University of Victoria in British Columbia, uses Nazi data in his research on hypothermia. He states, “I don’t want to have to use this data, but there is no other and will be no other in an ethical world.”
Still others feel that the data from inhumane experiments should only be used “in the most exceptional circumstances” and solely “in the absence of ethically derived data.”
In order to decide what the medical community should do with data from unethical human medical experimentation, we need to ask ourselves:
- Can some ‘good’ be salvaged from the ashes, as Kristen Moe asserts in the above quote?
- How does one cite the data if one is to use it?
- Does one ignore where the data came from?
Or, like the Doctor from Voyager suggests when he responds to Moset’s request to publish a paper together: “A footnote, perhaps. For further details, see Cardassian death camps.”
We do not, as a community, have an answer to the question of what to do with data from unethical medical experiments. We do, however, have a moral imperative: We must make sure ethical guidelines like the Nuremberg Code are followed when experimenting with humans; we must make sure that we never again let anything like what happened during the Nazi human experiments happen again; and we must always consider the precedent that we are setting for the future.
https://history.nih.gov/research/downloads/nuremberg.pdf. Accessed 8/18/2016.
Cohen, B. “The Ethics of Using Medical Data From Nazi Experiments.” Jewish Virtual Library. http://www.jewishvirtuallibrary.org/jsource/Judaism/naziexp.html. Accessed 2/26/2010.
Garfield, E. Current Contents #28, p.3-13, July 15, 1985.
Moe, K. “Should the Nazi Research Data be Cited?” Hasting Center Report, December, 1984 pp. 5-7.
Garfield, E. “Citing Nazi ‘Research’: To Do So Without Condemnation is Not Defensible.” Essays of an Information Scientist: Science Reviews, Journalism Inventiveness and Other Essays, Vol 14, p. 328-9, 1991.