From the Archive: Informed Consent and Medical Research

In our “From the Archive” series, we revisit articles from past issues of the journal. This installment of the series will focus on the nature of informed consent in medical research: here through a case of using radioactive plutonium on living hospital patients. In response to our readership poll, this article was chosen for its discussion of themes valuable to both medical anthropology and to science and technology studies. The article touches on issues pertinent to social studies of health, human subjects research, and the relationships between government, science, and public knowledge.

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Today in From the Archive, we will explore Sharon R. Kaufman’s article “The World War II Plutonium Experiments: Contested Stories and their Lessons for Medical Research and Informed Consent” (Culture, Medicine & Psychiatry June 1997. Volume 21 Issue 2, pages 161-197.) Kaufman opens her argument by asserting that “informed consent is shown to be an evolving process and discursive practice that cannot be understood apart from its historical and cultural embeddedness.” To address this point, she draws on the public response to medical research carried out on 18 patients across the United States who were injected with plutonium: a WWII-era experiment that illustrates the evolving nature of consent between the past and the present. Kaufman suggests that, rather than simply maligning this past research as unethical, we must consider how consent itself is not a static concept.

The author begins by explaining that this experiment, which operated between 1945-1947, only entered common public knowledge in 1993, when once-classified documents about the research were released. The release led to widespread outrage, as media outlets decried the federal government for sponsoring the secret project and endangering the lives of patients. Two central narratives emerged from the information release: a report penned by a journalist, and a report developed between 1994-1995 by a faculty committee at the University of California San Francisco (UCSF) where three of the patient experiments had formerly occurred. The faculty committee’s report aimed to develop a scientific and ethical account of the experiment to be made available to the public and the “university community.”

Though both reports drew information from numerous primary historical documents that described the case, Kaufman cautions us that both accounts are anachronistic, and each crafts a contemporary story consistent with the audience and the authorship of each piece. The journalist’s scathing report emphasized the vulnerability of individual citizens and the hazards of a government able to “harm and deceive,” whereas the committee report instead highlighted the ethics of scientific research and the methodology of the experiment, while paying less heed to the matter of government secrecy. The latter report concluded that the research did not meet either modern measures of informed consent or consent practices of the era in which the experiment was performed; the journalist’s report did not draw this distinction, instead suggesting that the experiment was unethical in both past and present because of the long-term effects of the research on participants or their families.

Kaufman writes that while both reports rightfully agreed that the experiment was “troubling” and that it had undeniable effects on research participants, they simultaneously direct us to a larger issue. Consent, she posits, is scarcely stable: it is situated within too many contexts to be defined in any single fashion. For instance, she notes that patients cannot always distinguish between “therapy” and “experiment” in medical research: thus meaning that the trust participants have in their clinicians’ recommendations for care, and informed consent for research on their illness, cannot always be separated. Likewise, high-risk experiments are not inherently unethical despite being potentially ‘unsuccessful,’ in whatever manner this is defined by researchers and participants. Thus there is no stable measure for informed consent which can be applied to all experiments, in all historical periods.

Kaufman also remarks that such discussions about the “elusive” nature of consent did not formally begin until 1966, the year that Henry Beecher published a landmark article on ethics in clinical research. This was historically much later than the era of the plutonium experiments in the 1940s, when “consent, however informal in character before the war, frequently took a back seat to the sense of urgency and necessity for human experimentation brought on by the war.” Today’s conversations about the autonomy of the patient, transparency surrounding the risks and aims of medical research, and the strengthening of informed consent arrive out of a “different” historical moment, the author states.

This leads Kaufman back to the two plutonium narratives published in the 1990s. She concludes that “as evocations of a moral stance, the narratives
challenge us to compare the past with the present and to reconsider the
idea of moral progress in human experimentation. They promote scrutiny
of contemporary ethical discourses about trust, risk, and the nature of the
physician/investigator-patient/subject relationship.” Kaufman’s article, in sum, invites us to consider the social and historical situatedness of consent in medical research. Rather than characterizing consent as stable across time, she presents a case that underscores how past experiments, contemporary perspectives, and current ethical standards intersect to create new narratives about the complexities of medical research.


 

To access the full article, click here: http://link.springer.com/article/10.1023/A%3A1005360928209

2016 Conferences in Medical Humanities and Social Medicine

One of the running features here at the blog is a recurring series on upcoming conferences in fields of interest to our readers, namely medical anthropology, medical humanities, and other cultural studies of health and illness. In this installment, we present a master list of conferences in 2016 that span these disciplines or that encourage interdisciplinary approaches to the social study of medicine. All conferences are listed chronologically. Many of these conferences have abstract submission deadlines that are swiftly approaching: these dates are listed below in the description of each conference posting.

If you would like to add a conference or meeting to this list, please submit details via email to our social media editor, Julia Knopes, at jcb193@case.edu. We welcome postings for both domestic (USA) and international conferences.


2016 International Conference on Medical Humanities

March 11th-12th 2016

Warsaw, Poland

Details here.

This conference welcomes papers from all areas of medical humanities as well as medical anthropology, sociology, and medical education. Papers presented at the conference will be published in a collected volume. Deadline for abstract submission is January 20th 2016.

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SfAA 2016 Meeting Logo, via SfAA website.

Society for Applied Anthropology 2016 Meeting: SMA Co-sponsored

March 29th-April 2nd 2016

Vancouver, British Columbia

Details here.

The Society for Medical Anthropology is a co-sponsor of this year’s SfAA Meeting in Vancouver. Though the deadline for abstract submissions has passed, attendees can view the preliminary program for the conference here.

American Ethnological Society 2016 Meeting

March 31st-April 2nd 2016

Washington, DC

Details here.

Though this annual conference welcomes work in all aspects of cultural anthropology, this year’s meeting focuses on disorder and normativity: particularly salient themes in medical anthropology and social medicine. Deadline for proposal submission is January 31st 2016.

A Palpable Thrill: An Introduction to Medical Humanities 2016

May 6th-7th 2016

Hamilton, Ontario

Details here.

The organizers state that this event will be “an interdisciplinary conference that seeks to promote inclusion of the humanities in medical education and, conversely, encourage arts students and scholars to find salience and inspiration in medicine.” Deadline for abstract and other presentation submissions is January 15th 2016.

Medical Anthropology Young Scholars (MAYS) 2016 Meeting

June 23rd-24th 2016

Lisbon, Portugal

Details here.

MAYS, a network under the European Association for Social Anthropologists, is holding its annual meeting at the University of Lisbon. Meeting themes include intergenerations and temporality. Deadline for abstract submissions is February 7th 2016.

7th International Comics & Medicine Conference: Stages & Pages

July 7th-9th 2016

Dundee, Scotland

Details here.

This year’s conference will explore the nature of performativity and how comics engage with themes of clinical roles, medical spaces, and the body-as-stage. Deadline for abstract submission is February 12th 2016.

Issue Highlight: Vol 39 Issue 4, Incarceration & Medical Anthropology

This blog post is the second installment of our three-part issue highlight on the new December 2015 issue of Culture, Medicine & Psychiatry (the full issue is accessible here.) In this week’s blog, we examine Carolyn Sufrin’s article on the shared roles of clinicians and anthropologists working with incarcerated women in the United States.


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Clinician-anthropologists are in a unique position to lend voice to their participants and to care for their medical needs. For Carolyn Sufrin, who served both as a physician and an ethnographic researcher for incarcerated women in the United States, the clinical and anthropological roles intersected in deeply meaningful ways. Sufrin notes that in these dual roles, she observed with female prisoners and analyzed their experiences, and provided reproductive health care and delivering the same women’s babies in a county hospital, where imprisoned women gave birth. The women were alternately enrolled in Sufrin’s study upon ceasing to officially be her patients, or were individuals that Sufrin cared for during her tenure as their OB/GYN.

Sufrin uses her case as an example of how to interpret the ethical consequences of working as a clinician-anthropologist. Part of the challenge she faced as both a physician and anthropologist to the women was that IRB and HIPAA regulations divided the types of data she could use in her anthropological research. Though some details of her participants’ lives, such as past trauma or childhood abuse, were essential to their experiences as mothers and as incarcerated women, she could not use this data inasmuch as it had been shared with her in the context of a patient-practitioner interaction: in other words, it was considered classified personal health information that could not be subsequently utilized in her ethnographic research. These methodological hurdles, Sufrin explains, shed light on the complexities of what constitutes “sacrosanct” data. It also suggests how the safeguarding of medical data does not necessarily translate to the “protective” collection of ethnographic data which is not isolated to the case of individual patients, and which relies on knowledge of participants and their connections to other people (in this instance, to individuals in the participant’s life who had caused past psychological harm.)

Likewise, as stated earlier, relationships between the participant/patient and the clinician/anthropologist are another form of interpersonal connection which must be reconfigured depending on the nature of the exchange taking place. In Sufrin’s case, this meant being clear with her participants that– upon entry into her anthropological study– she was no longer their physician, and that the nature of their exchanges and their professional relationship would take a new form. She could share their information (albeit de-identified), unlike information drawn solely from their medical records or from an examination.

Yet here, Sufrin notes that the anthropologist– like the clinician– is still engaged in an ethic of care. For example, one of Sufrin’s former patients in the prison was charged with child endangerment after giving birth in an alley and handing her child to a stranger, unable to afford treatment at a hospital following her release from prison. The story made news headlines, and as public knowledge, was within the realm of information that Sufrin employed in her ethnographic analysis of reproductive health in the American prison system. However, Sufrin knew an added piece of information that was not already publicized from her interaction with the woman in prison: a clinical detail that she understood as a physician, but was shared during her time as an ethnographic researcher. This detail would have enhanced her analysis of the situation, but she chose to omit it out of concern that to publicize the detail would be to betray the woman’s trust in her as a researcher and as someone who served in the prison as a physician.

In other instances that Sufrin discusses, her role as both an anthropologist and clinician led the women she worked with in each capacity to feel as if she was especially attentive and caring. Rather than always relying on her medical authority, Sufrin underscores her decision to remain non-judgmental and supportive even when the women in her study had made potentially harmful choices; for example, she chose not to openly admonish a woman who was continuing to use crack upon release from jail, despite being thirty-two weeks pregnant. Sufrin notes that her silence hid her own frustration with this choice, but it strengthened the woman’s trust in her as an anthropologist and “as a doctor.”

In sum, these dual roles ultimately bolstered her relationships to the incarcerated and formerly incarcerated women that she served. Thus, the author argues that both anthropologists and clinicians share an “ethic of care” in their relationships with research subjects or patients. This ethic involves a careful fostering of the professional, interpersonal connections that ethnographers make with research participants, or that physicians make with their patients. This care entails the protection of private information and the researcher/clinician’s conscious attendance to interpersonal exchanges that bolster the patient/participant’s trust in the clinician/anthropologist. Likewise, an analysis of the clinician role alongside the anthropological one demonstrates both the delineations between multiple forms of care and social connection, as well as the shared commitment in medicine and anthropology to the sensitive attendance to patient and participant experiences.

4S 2015: Sessions on Biomedicine, the Body, and Knowledge

Last year, we featured blog posts that highlighted paper sessions on various topics in medical anthropology and social medicine presented at the annual AAA (American Anthropological Association) meeting in Washington, DC. This year, we are heralding in conference season by featuring details on two upcoming events: the AAA meeting and the annual meeting of the Society for Social Studies of Science (4S). Both conferences will be held in November 2015 in Denver, CO. You can find out more about the AAA Meeting here (http://www.aaanet.org/meetings/) and the 4S Meeting here (http://www.4sonline.org/meeting.)

Logo of 4S via the organization's website

Logo of 4S via the organization’s website

The 4S organization brings together researchers whose works span all aspects of scientific research, production, and the impact of science on society. Despite the organization’s breadth of represented interests, many scholars of social medicine take a science and technology studies (STS) approach and are active in 4S. This week, we highlight sessions at the 4S Meeting that emphasize their research and paper sessions on biomedicine. Sessions are organized chronologically by date and time.


Sex and Gender in Biomedicine

Thursday, November 12th 8:30-10:00am

Click here for details on this session.

This session will feature three presentations on sex and gender in biomedicine focused on the following topics: cosmetic surgery in South Korea and the United States, the history of biological sex as defined by the sciences, and the role of a parasite transmitted through sex on the reproductive lives of humans. The papers propose new understandings of sex and gender as constructed through scientific knowledge and practice.

Examining the Exceptional: Case Studies of Knowledge Production in Biomedicine and Science

Thursday, November 12th 10:30am-12:00pm

Click here for details on this session.

Topics in this session will address: microevolution and genetic science on indigenous men in Brazil; the definition of crisis in emergency medicine in the United States; sickle cell patient advocacy in Brazil; a comparative case of pregnancy monitoring in the USA and the United Kingdom; and immigrant physicians and medical professionals arriving in the United States as an “exceptional” population. These papers will offer various examples of the way that science constructs meaning for patients and practitioners of biomedicine alike.

Biomedicine and Difference

Thursday, November 12th 2:00-3:30pm

Click here for details on this session.

In this session, presenters will explore: human microbiome research; astronauts, race, and physical preparation for conditions in outer space; representations of race in a stroke awareness campaign; past technologies for measuring skin color; and the breakdown of ethnic origin by genetic percentages. These papers will scrutinize the complex and often problematic relationships between race, science, medicine, and the body.

The Body in Biomedical Knowledge

Friday, November 13th 4:00-5:30pm

Click here for details on this session.

This session will address the following topics: food insecurity, the use of inmates as test subjects, obesity, and anatomical and physiological representations in 20th century Chinese medicine. The session will also feature the work of our blog editor, Julia Knopes, on the ontological status of cadavers as objects in Western medical traditions.

Replaceable Parts: Prosthetic Technologies in Biomedicine 

Saturday, November 14th 10:30am-12:00pm

Click here for details on this session.

Presenters in this session will speak about new surgical robots, the role of prosthetic limbs amongst wounded military veterans, cross-cultural readings of prosthetic making in Canada and Uganda, 3D organ printing and facial transplants, and the experiences of amputees in an ever-changing landscape of prosthetic and bionic technologies. The sessions in this paper panel will offer fresh perspectives on the meaning of the cyborg, a continued area of interest for many medical anthropologists and researchers in social medicine.

Book Release: Cheryl Mattingly’s “Moral Laboratories: Family Peril and the Struggle for a Good Life”

By: Julia Balacko, BA, MA

Case Western Reserve University

Book Cover courtesy of UC Press website

Book Cover courtesy of UC Press website

This October, renowned medical anthropologist Cheryl Mattingly’s newest book is set to be released by the University of California Press. Blending her training in anthropology and ethnography with her passion for moral philosophy, Mattingly’s volume will explore the daily lives and decision-making of African-American families caring for children with serious chronic illnesses. It asks us to view the minute workings of day-to-day social life and interaction as a “laboratory” in which new moral ideals and understandings of what constitutes “a good life” can be negotiated. Be sure to read an extended excerpt of the book here: http://www.ucpress.edu/book.php?isbn=9780520281202