Issue Highlight Vol 40 Issue 2: Reproductive Experiences Amongst Haredi Jewish Women

Posted by jknopes

Over the next few blog updates, we will be spotlighting new articles from our June 2016 issue, which you can access in full here. The theme of this special issue is The Clinic in Crisis: Medicine and Politics in the Context of Social Upheaval. In addition to articles that address the topics of societal unrest, political change, and human health, this installment also turns to how people navigate change and decision-making within the contexts of their own lives. Specifically, one article questions whether individual autonomy over medical decisions is a characteristic of medical care across cultural contexts. In Teman, Ivry, and Goren’s article “Obligatory Effort [Hishtadlut] as an Explanatory Model: A Critique of Reproductive Choice and Control,” we learn that the notion of reproductive choice and control does not cleanly map onto the procreative experiences of Haredi (ultra-Orthodox Jewish) women. To access this article in full, click here.

Reproductive technologies have expanded the range of procreative choices a woman and members of her family confront: should birth control be used to limit the number of children she wishes to have? Should assisted reproductive technologies (ARTs) be used to facilitate conception, or should a woman abort a fetus that has tested positive for a developmental or congenital ailment? The authors of this article suggest that in these discussions, another question has emerged. Are these decisions truly reflective of individual choice, or do individual mothers and members of their community perceive the reproductive course as one over which no person has ultimate control?

Amongst Haredi (ultra-Orthodox Jewish) women in both the United States and Israel, the authors observed another way that individuals framed their reproductive experiences. Rather than describing their procreative choices as a form of individual control over one’s life course, the Haredi women referenced hishtadlut, or obligatory effort: the notion that they were obliged to God to try to become pregnant, but not responsible for the outcome if they were unable to do so. In hishtadlut, women have “room for effort” in that they may flexibly interpret and enact what constitutes a serious attempt to become pregnant or maintain a healthy pregnancy per their religious duty to God to have children. In this explanatory framing, women recognize that they must consciously make choices that would enable God to enact a divine plan for them: however, they are not accountable for the outcome if, having invested the “effort,” God’s plan does not come to fruition or leads to the birth of a child with a developmental disability or congenital condition.

The concept of hishtadlut extended to the use of various reproductive technologies. For instance, there are many concerns about hereditary genetic illnesses like Tay-Sachs disease within the Haredi community. To ameliorate this issue, blood samples from young Haredi men and women enrolled in high school are collected and catalogued into an anonymous database. If two families are arranging a marriage between a son and a daughter, they are able to consult the database to confirm whether or not both individuals are genetic carriers of an illness. This prevents unions between two carriers who would have a greater likelihood of having a child with a genetic illness; thus a genetic carrier would be paired with a non-carrier spouse. Most women interviewed for the article agreed that this technological system facilitated the will of God, as it reduced the chance that a couple would face the difficulty of raising a disabled or an ill child. Here the technology is seen as a “blessing” from God, as it allows families and couples to avoid “heartbreak,” while bolstering a couple’s ability to have healthy children per God’s divine plan.

In other instances, technology is viewed as irrelevant out of the hishtadlut principle. For example, the Haredi women perceived genetic testing for fetal developmental or other congenital illnesses as having little purpose. In Jewish law, abortions beyond 40 days after conception are prohibited, and all fetal diagnostic testing occurs after this point in a woman’s pregnancy. Thus, the women held that the test was inconsequential, as God’s will for them and their fetus had already been ordained. If a baby was born with a disability, this was part of their fate as decided by God. Here “choice” is viewed as God’s choice for the mother and baby, rather than the mother’s own control over whether or not to give birth to a child with potential developmental or congenital conditions.

As Teman, Ivry, and Goren’s research illustrates, “choice” and “control” do not necessarily apply to the reproductive experiences of women and their families across cultures. Indeed, in a deeply religious community such as the Haredi Jews, “choice” is attributed to God while individual reproductive decision-making is cast as a means to allow God to work through individuals to enact divine will. Haredi women did not describe themselves as accountable for becoming pregnant (or having a healthy child), but they did feel obligated to use technologies and consciously make reproductive decisions or avoid certain interventions. These actions, they held, would enable God to direct their journey to motherhood and to fulfill their purpose as parents.

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

Posted by jknopes

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.

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.

Issue Highlight: Vol 39 Issue 4, Posthumous Reproduction

Posted by jknopes

Our final issue of the year– Volume 39 Issue 4 December 2015– has just arrived. In our last blog post series for 2015, we begin with a three-part feature of the latest publications at the journal in this new issue. In addition to the article previews in this series, our readers can access the full issue here. In this post, we explore Yael Hashiloni-Dolev’s preliminary research on posthumous reproduction in Israel (full article accessible here.)

Biomedicine, through its innovative application of technology, can reconfigure biological experiences in ways that alter or reinforce cultural beliefs surrounding life, death, reproduction, kinship, parenthood, and social roles. Most recently, this has become a central issue in the field of assisted reproductive technologies: where biomedical interventions potentiate new relationships between parents, families, and children. But while assisted reproductive medicine is often discussed in terms of generating life, these new generative technologies may also intersect with death in novel ways that challenge existing understandings of kinship and familial relationships.

Hashiloni-Dolev article studies Israeli lay perceptions of a new concept in assisted reproductive medicine called posthumous reproduction (PHR.) In sum, PHR entails the use of genetic material from deceased parents to conceive children after their deaths. This usually means a woman will opt to become artificially inseminated with a husband or partner’s sperm retrieved while the man was in a coma or vegetative state: however, it may also include the fertilization of a woman’s eggs, frozen while she was alive, and gestated in a surrogate mother. Even frozen embryos of two deceased parents (a mother and father) might be “adopted” and implanted into a female relative or another recipient, who subsequently gives birth to a child whose biological parents are no longer alive. This process also facilitates the possibility of posthumous grandparenthood, and indeed, some parents whose adult children have died may seek out PHR technologies (include allied technologies such as surrogacy) to produce grandchildren.

Israel is one of the few countries that permits some forms of PHR, and it is a progressive nation in terms of reproductive technologies: its state health system covers the costs of ARTs (assisted reproductive technologies) for couples who have difficulty conceiving. Although Israel does not permit all forms of PHR, it does allow for the collection of a man’s sperm upon a wife’s request to carry his child upon his death (what the author calls the “prototype scenario.”) In this regard, Israel served as a prime location for surveying participants and testing initial ideas about the public perception of PHR: a new frontier of ARTs yet to be studied in the anthropological literature.

Through 26 semi-structured interviews with newlywed or childless couples, Hashiloni-Dolev discovered that there were some inconsistencies between the Israeli PHR policies and the participants’ understanding of PHR technologies. For instance, the government stipulated that PHR could occur via the retrieval of sperm from a dying or recently deceased father upon the wife or female partner’s instruction. The policy states that the retrieval could occur given evidence of a man’s “presumed wish” that he would want his spouse or partner to carry his child after death. However, “wish” and “consent” were interpreted differently by men interviewed for the study. The men typically stated that while they would defer to their partner’s wishes to have a child after their death, they themselves were uncomfortable with the possibility of their partners having the child and being unable to “move on” should they pass away. In this instance, while the man’s presumed “wish” might not change a woman’s decision to retrieve his sperm posthumously, it does not mean the man would “consent” to the process if he were not already dead.

Conversely, consent becomes more complicated given the circumstances that typically surround the use of PHR. The man is presumably young, such that his female partner would be able to carry his child, and would have died suddenly: thus making it nearly impossible to obtain his consent unless he had already affirmatively offered it while still alive and healthy.

There were also issues related to the family life of a child born through PHR techniques. Both male and female participants worried about the emotional stability and security of children born out of such conditions, and expressed their concern with new policies being proposed that would allow for expanded posthumous grandparenthood rights. The participants believed that the decision to have children following the death of a spouse was between the couple, and was not between other family members. Likewise, many participants worried about the birth of a child as a living shrine to the deceased, rather than as a new and autonomous member of the family.

In these responses, it is clear that while both biomedical technologies and governmental policies may enable PHR to occur, the process is not always viewed in such liberal terms by individuals who could be most likely to use it. Posthumous reproduction thus supplies medical anthropologists and scholars of social medicine with a nuanced case of the cultural position of new technologies, and the concerns that individuals across cultures have with these new reproductive tools: particularly as they relate to consent, kinship, and the roles of parents.

March 2015: Preview of Books Received

Posted by jknopes

This week, we are featuring previews of five books received for review at Culture, Medicine, and Psychiatry. Be sure to check out more articles, reviews, commentaries, and case studies published in the first issue of volume 39 (2015) here: http://link.springer.com/journal/volumesAndIssues/11013

via Westview Press

Language, Culture, and Society: An Introduction to Linguistic Anthropology

Zdenek Salzmann, James Stanlaw, and Nobuko Adachi, eds.

This textbook was first published in 1993, and this is the book’s sixth edition. The new incarnation of Language, Culture, and Society features has been revised and expanded with further explanation of the sociocultural context of language. It is also complete with class exercises, discussion questions, and other student resources. The book pays special attention to multilingual and transnational linguistic anthropology.

More details from Westview Press here: http://westviewpress.com/books/language-culture-and-society/

Via UC Press

Haunting Images: A Cultural Account of Selective Reproduction in Vietnam

Tine M. Gammeltoft

This ethnographic account explores the lives of pregnant women in Hanoi, Vietnam whose fetuses were deemed biologically abnormal after ultrasound examinations. Gammeltoft considers the moral dilemmas these women face against the backdrop of their everyday lives and the roles of their family members in reproductive decision-making.

More details from UC Press here: http://www.ucpress.edu/book.php?isbn=9780520278431

Via UC Press

Can’t Catch a Break: Gender, Jail, and the Limits of Personal Responsibility

Susan Starr Sered and Maureen Norton-Hawk

This ethnographic work traces Boston women’s experiences of sexual abuse, violence, inadequate social and therapeutic programs, and the impacts of local and federal policies on incarceration and criminal punishment. The authors consider how these women’s struggles are cast aside as the consequences of “bad choices” and “personal flaws,” and how marginalized women make their way in this “unforgiving world.”

More details from UC Press here: http://www.ucpress.edu/book.php?isbn=9780520282797

Via Duke UP

Given to the Goddess: South Indian Devadasis and the Sexuality of Religion

Lucinda Ramberg

Ramberg’s account addresses a unique cultural tradition in South India, where girls and sometimes boys are married to a goddess. They have sex with partner outside of traditional marriage and conduct holy rites outside of the goddess’ temple, and complicate the boundaries between what is male and female. The author argues that goddess marriages challenge existing notions of gender, marriage, and religious practice.

More details from Duke UP here: https://www.dukeupress.edu/Given-to-the-Goddess/index-viewby=subject&categoryid=27&sort=newest.html

Via Johns Hopkins UP

Generic: The Unbranding of Modern Medicine

Jeremy Greene

This text is a social, political, and cultural history of the rise in generic pharmaceuticals. It tracks the development of modern generic drugs from early 20th century hacks who counterfeited popular medications through the growth in powerful corporations who first produced un-branded drugs. Greene describes generic drugs as a seminal movement towards more equitable, affordable medical care by giving patients quality medicines at a reduced price.

More details from Johns Hopkins UP here: https://jhupbooks.press.jhu.edu/content/generic