2008 Case Studies

Ethics in the Science Classroom
Developed by the 2008 participants of NWABR's annual Ethics in Science summer workshop, these Case Studies provide short summaries, questions for discussion, and sample ethical analysis.

These selected cases are works-in-progress shared by teachers. Many of them reference the NWABR Ethics Primer. If you do utilize these lessons, please credit the appropriate source.

Ashley X
Jacob Dahlke
Ashley was diagnosed with “static encephalopathy,” meaning that her brain had stopped developing. Doctors determined that there was no chance of Ashley improving over time. Ashley’s parents grew concerned over their abilities to continue to care for Ashley at home. With her continued growth and development, she would eventually become too large for them to manage her needs, including feeding her, changing her, bathing her, and positioning her during the night. Additionally, they were concerned at the prospects of her sexual development. Ashley’s parents made three requests of doctors at Children’s Hospital and Regional Medical Center in Seattle, Washington. First, they wanted Ashley to have a hysterectomy (removal of her uterus) in order to prevent any risk of menstruation and/or pregnancy. Second, they requested the removal of her breast buds, which would eliminate the development of breasts altogether. Finally, Ashley’s parents requested medical treatment to limit her final adult height and weight through hormone therapy. High dose hormone therapy to limit height was a common treatment for “tall girls” in the 1960’s and 70’s and the medical risks over the long term are well known to be limited.

Buck vs. Bell (Eugenics)
Paula Fraser
In 1924, the commonwealth of Virginia adopted a statute authorizing the compulsory sterilization of the mentally retarded for the purpose of eugenics. On September 10 of that year, the superintendent of the Virginia State Colony for Epileptics and Feebleminded, filed a petition to the Board of Directors to sterilize Carrie Buck, an 18-year-old patient at the institution who it was claimed had a mental age of 9. The argument was made that Buck represented a “genetic threat to society.” According to documents, Buck's 52-year-old mother possessed a “mental age of 8” and had a record of “ prostitution and immorality.” She had three children “without good knowledge of their parentage.” Carrie, one of these children, had been adopted and attended school for five years, reaching the level of sixth grade. However, she was alleged to be "incorrigible" and “eventually gave birth to an illegitimate child.” Her adopted family had committed her to the State Colony as " feeble-minded" (a catch-all term used at the time for the mentally disabled), no longer believing that they were capable of caring for her. It was later discovered that Carrie's pregnancy was not caused by any act of "immorality" on her own part. In the summer of 1923, while her adoptive mother was away, a nephew raped Carrie, and her later commitment has been seen as an attempt by the family to save their reputation.

To Test or Not to Test? (Genetic Testing)
Jamie Cooke
An instant chill ran through Victoria Grove when, after listening to her lungs, the nurse told her she had a cold. Her worst fears were emerging. When Ms. Grove’s requests for a chest X-ray were denied, her anxiety heightened. It was not necessary, according to the nurse. “Should I tell them now or wait until I’m sicker?” she wondered. The nurse and her doctor did not have as much information as she did. Through a private online genetic testing service called DNA Direct, she learned she was alpha-1 antitrypsin deficient. This increases the chances of emphysema and lung damage due to pneumonia. If this “cold” turned out to be pneumonia she could get permanent lung damage due to her condition. Even with these risks she decided to keep quiet; at age 59 the fear of repercussions to her health insurance and job were greater than the fear for her health.

Edible Vaccines (Genetic Modification)
Renee Agatsuma
Vaccines reduce diarrhea by provoking an immune response to the pathogen. Traditional vaccines (delivered intravenously) are difficult to store and transport because they need to be kept cold, which requires a reliable electricity grid, as well as refrigerated trucks. This requirement significantly increases the cost of these vaccines. In addition, traditional vaccines need trained medical personnel to deliver them. To significantly cut down costs in both refrigeration and personnel, scientists have been trying to develop vaccines that that keep well, can be transported easily, and can be administered by someone with basic health knowledge. These new types of vaccines, termed “edible vaccines” have been engineered into plants. Easy to transport, these plants could be consumed either directly or in dehydrated form. These new vaccines are currently in development in genetically modified (GM) crops such as tomatoes, potatoes, bananas, and rice.

Separate And Unequal: Injury Prevention for Young Women
Rosetta Lee
Title IX has helped to shape a couple of generations of girls who believe they are as capable and as tough as any boy and has resulted in an explosion of sports participation among girls and young women. And with this increased participation, from travel teams up through some of the signature programs in women’s college sports, women are suffering knee injuries that take them off the field for weeks or seasons at a time, or sometimes forever. Physical therapists and orthopedic surgeons have designed a customized injury-preventing warm-up called the “PEP program.” Though in its initial stages, the program seems to have dramatic results in preventing ACL injuries for girls. Some critics of the PEP program and others like it believe that these are attempts to solve a problem before you are even confident of its cause. The bigger barrier, though, may be political. Advocates for women’s sports have had to work hard for one thing: making sure they have equal access to high school and college sports. It’s hard to fight for equal rights and, at the same time, raise concerns about injuries that might suggest women are too delicate to play certain games or to play them at a high level of intensity.

Teen Chooses Beliefs Over Lifesaving Care
Jodie Spitze
Dennis was diagnosed with acute lymphocytic leukemia, a type of cancer that affects bone marrow. This cancer is typically treated with chemotherapy, in which patients are treated with drugs to kill the affected cells. Because bone marrow produces blood cells, chemotherapy causes a dramatic decrease in the number of blood cells the patient has. To remedy this, the patient is given blood transfusions. The majority of patients who receive this treatment survive. Without the transfusions, the patient will die. Dennis was prepared to immediately begin chemotherapy, but recognized that blood transfusions conflicted with his faith. Dennis was clear with his doctors when they began chemotherapy that he would refuse blood transfusions; in fact he even threatened to pull out the IV if they attempted to give him blood. His aunt, who had guardianship of Dennis, agreed with his decision, as did members of his congregation. When his biological parents found out, however, they were stunned – they wanted doctors to do everything possible to save their son.


Kidney Transplantation
Lori Stanton
When Ashwyn was 19 years old, he became disenchanted with the materialistic attitudes he saw displayed by fellow students in the college graphic design courses he was taking. He began hanging out with a group called the Jesus Christians (a small religious group founded in 1982) and reading their literature. More than half the members of the small Jesus Christian group have donated a kidney. They describe the act as a gift of love that implements Jesus’ teachings. The first intended recipient of Ashwyn’s kidney died before arrangements could be completed for the transplant. He was matched with a second recipient, and flew to a hospital in Toronto where he met with a psychologist and a social worker, as well as the hospital bioethicist to make sure the motives and risks of the surgery were clear. Surgery was scheduled for the following month. In the meantime, Ashwyn’s mother, who had initially accepted his decision to donate a kidney became increasingly concerned about his involvement with the Jesus Christians. Ashwyn refused to attend any family gatherings without at least one other member of the group and would not discuss the kidney donation plans without the leader of the Jesus Christians present. Both his mother and stepfather wrote letters to the hospital planning the transplant as well as other transplant programs around the country laying out their concerns. They also stated that they felt that Ashwyn was not capable of making an independent decision.

Is it Ethical to use Nazi Research?
Peter Bonifaci
Phosgene gas is a chemical weapon. Due to health concerns for factory workers and people living near the manufacturing plants, the Environmental Protection Agency (EPA) is considering stricter regulations for phosgene. In their research, EPA conducted tests on mice and rats to discover what effects phosgene might have on people near the manufacturing plants. The EPA was forced to rely solely on animal experimental data due to the ethical concerns with using human test subjects. The EPA had no data on exposure in the workplace to compare to the animal research. Due to the lack of human data, the EPA’s assessment branch suggested using Nazi data in its place. During World War II, a Nazi scientist, Bickenback, exposed concentration camp prisoners to phosgene. They were not asked for consent. German’s rational was to find a way to protect German soldiers from phosgene gas attacks. The issue touched off a fierce debate among EPA scientists. Ila Cote an EPA toxicologist who helped draft the study argued, “The ethical issues are very real, but my personal opinion is that when data is collected in an unethical fashion, if it is important in protecting public health and is not available in any other way, I would use it.” Should Nazi data be used to help set toxicity regulations?

Research Ethics: Honesty in Data Reporting
J. Chowning
You have spent the last 7 years in a PhD program. You’re in a lab with 5 other graduate and post-doctoral students. Your lab is located in a major university and is led by an enthusiastic, optimistic senior scientist (the “Principal Investigator” – PI) who is widely published and highly regarded. One day, you visit the PI’s office to tell her you’re concerned about your project. You’re afraid it isn’t yielding usable results. Although you’ve been trying for several months, you haven’t been able to replicate earlier lab findings. The PI gives you pages of a grant application she’s submitted to the National Institutes of Health (NIH) that built upon the work of another student in the lab named Garett, and encourages you to read it over to see if there’s anything that might suggest a new project. Your enthusiasm turns to alarm as you notice that one figure in the application is represented as unpublished data although you know it was published several years ago. You show the pages to Garett and he notes that they describe the results of an experiment that wasn’t actually performed, and include several published and unpublished figures that seem to be manipulated..

Savior Siblings (conceiving donor siblings by Pre-implantation Genetic Diagnosis)
Heidi Rounds
Mary Ayala and her husband Abe took a big chance to begin the process of having a new baby in attempt to prolong the life of the daughter they already had. Abe went through a reverse vasectomy, and Mary became pregnant at the age of 43. For them, the risks involved with the pregnancy were far less than the risk of losing their 19-year old daughter Anissa. Anissa had been diagnosed with chronic myelogenous leukemia. In most cases the patient will die within three years if they do not receive a bone marrow transplant. If, however, a bone marrow transplant is performed the success rate is rated at 70%. In 1990, Marissa Ayala was born. At the age of 14 months, she became the bone marrow donor for her sister Anissa.

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