Search Results

Cases illustrating the exclusion of women in biomedical research, experimental treatment and maternal fetal surgery, human reproductive cloning, and embryonic stem cell research are presented. For each topic, empirical and theoretical factors are discussed from an “egalitarian perspective” that imputes privileged status to the standpoint of those who are “nondominant”. Implications of different positions about moral status of embryos and fetuses, and about people born with disabilities are also considered.

This chapter looks at the characteristics of the experimental treatments that are used to manipulate incivility, as well as the kinds of people used in the experiments. Because of the high degree of control over the political content of the broadcasts, the participants involved in the conflicts, and the way in which the cameras covered the dispute, it is possible to draw strong causal inferences about the impact that incivility and camera perspective have on viewers' experiences of political conflict. Although the professional production quality meant that none of the subjects voiced suspicions about the programs themselves, it is still plausible that other, unidentified differences between the real world and this exchange may have altered the outcomes.

In 2014, the world began to witness an unprecedented Ebola epidemic in West Africa that is now smoldering. Ebola had a fatality rate of 40% to 60% in this epidemic due to a lack of adequate health infrastructure and overwhelmed aid organizations at the height of the outbreak. These grim prospects quickly prompted proposals to use experimental treatments and vaccines for Ebola that were in the earliest phases of development at the time. Doctors Without Borders/Médecins sans Frontières (MSF) played a key role in the rapid launch of clinical trials of the available experimental interventions. This chapter traces how MSF negotiated the trials under challenging circumstances, focusing on trials of experimental treatments. It provides a detailed account of the difficult tradeoffs MSF faced and shows how the organization’s values and beliefs shaped key decisions about research priority setting and clinical trial design.

This chapter looks into the battle of Frances Legendre with cancer. Mrs. Legendre was a businesswoman who was accustomed to being in control. She was diagnosed of ovarian cancer at the age of 51. When Mrs. Legendre came to the Palliative Care Unit, she was suffering from advanced ovarian cancer and was prepared to die. She exuded acceptance and calm in the face of her bleak medical situation, drawing her family and the palliative care staff into her plans and images of eternity—an idea found by medical professionals as acceptance or denial. However, Mrs. Legendre did not die then. A few weeks later, she was convinced that it was not her time yet, finding a new courage and launching into a relentless effort to find a cure. Mrs. Legendre insisted that her oncologists enroll her—against their own judgment—in high-risk experimental treatments, and the palliative care team found itself advocating more aggressive care for her. When all the treatments failed, Mrs. Legendre went back to the Palliative Care Unit to die again. This time, she and her family asked for a quick and peaceful death.

This chapter follows the journey of people living with paralysis and neurodegenerative conditions as they undergo fetal cell transplantation in China. It provides ethnographic insight on how these patients have operationalized hope in Beijing hospital wards, immersing themselves in the practical details of navigating an unfamiliar medical system while circumventing existential debates over the moral status of aborted fetuses. It begins by analyzing the online surgical report threads of the first three foreigners to receive Chinese neurosurgeon Dr. Huang Hongyun's fetal cell transplantation. All three were men from the United States who had suffered cervical-level spinal cord injuries. It then incorporates the experiences of a wide range of other fetal cell recipients in order to address the key points of disjuncture that Dr. Huang's foreign patients had to negotiate during their cross-cultural encounters in Beijing: conflicting expectations about caregiving, moral qualms about the use of fetal cells, and the embodied vicissitudes of experimental surgery.

This chapter examines how changes in the political economy of health care have encouraged enterprising Chinese clinicians to experiment with lucrative biomedical interventions for foreign patients. It follows the career trajectory of New Century Hospital's lead neurosurgeon, Chinese neurosurgeon Dr. Huang Hongyun, and contrasts his experiences with those of other clinicians in order to illustrate the ethnographic contours of medical entrepreneurialism in urban China. Recounting their struggles to balance individual interests, professional ethics, and global ambitions, it demonstrates how the pursuit of high-tech therapies by medical entrepreneurs is not just about making money but also about professional ambitions and nationalistic pride—a cultural phenomenon framed as technonationalism.

As Dr. Huang and the New Century staff members were busy devising new methods to document the effects of their experimental human olfactory ensheathing glial cell transplantation surgery, patients and their families also developed their own ways of assessing whether the experimental procedure worked. This chapter focuses on how fetal cell recipients and their families have engaged questions of efficacy in the transnational realm of experimental medicine. Prospective transplantation candidates carefully parsed online reports of others' surgical experiences and analyzed the credibility of Chinese neurosurgeons' claims, while postoperative patients monitored their bodies for signs of difference and parsed these changes online. It is argued that the digitally mediated forms of knowledge they have produced offer a poignant challenge to what counts as expertise and data in the quest for “evidence” in experimental medicine.

This chapter is a narrative of the author whose mother was suffering from cancer. The author recollects the memories of one of her visits along with her mother to the Kenneth Norris Cancer Hospital on the University of Southern California campus to meet the doctor. She recalls feeling disturbed when the doctor under whom his mother is going through treatment, suggests to her mother an experimental chemotherapy treatment where two kinds of chemotherapies are mixed to test the toxicity levels in humans. The author remembers interrupting the doctor's conversation saying she would not let her mother to be their guinea pig. However, despite the author's opposition, her mother readies for the experiment as she believes in the quality of life, not in the quantity of life. Furthermore, this chapter also peeps into the memories of the author's father.

In this dialogue, Dr. Rebecca Franklin moderates a heated exchange that took place at a meeting of the International Stem Cell Organization between two individuals who hold polarized views on stem cell tourism: Robert Flossel, a stem cell scientist, and Dr. Barbara Grant, who has argued in a book that there are insufficient ethical standards for clinical trials in Third World nations and wants Western nations to refuse data from trials that do not meet minimum standards. Flossel advocates getting government off the backs of scientists and out of the business of regulating clinical trials. The term “medical tourism” refers to patient travel from industrialized nations to foreign clinics for medical treatment. Here Flossel and Grant express their views on whether stem cell tourism should be supported as the quintessential free market of frontier medical therapies or should be abolished as a cruel commercial abuse of medicine that gives patients false hope. They also discuss the role of the state in protecting its citizens by prohibiting or warning against traveling abroad to receive uncertified experimental treatments with stem cells.

On July 29, 2014, Dr. Sheik Humarr Khan, Sierra Leone’s leading expert on viral hemorrhagic fevers, died of Ebola virus disease in the Ebola treatment center in Kailahun run by Doctors Without Borders/Médecins sans Frontières (MSF). From the day he learned he had tested positive for Ebola until the day he died, Dr. Khan became the focal point of urgent discussion and debate on medical ethics. These discussions included the proper use of experimental therapeutic agents during an unprecedented epidemic and policies and preparedness for international medical evacuation. Healthcare workers debated ethical points such as whether they should prioritize the greater common good over the interests of an individual. They agonized over whether they could justify placing the value of the life of one person above that of another.