Springer Science and Business Media LLC

Previous research has problematised the diversity of conceptualisations and operationalisations of ethnicity within health research and the field of Ethnicity and Health. In this article, we explore how practices in health research and the field of Ethnicity and Health themselves contribute to the enactment of different versions of ethnicity. Using a qualitative content analysis of contemporary peer-reviewed Dutch biomedical and health research, we identified various dynamics in research practices and the research situation, which are relevant to understanding the enactment of multiple versions of ethnicity and specific ethnic and racial categories in health research in the Netherlands. Specifically, we discuss the production of academic publications and the manner in which researchers must establish the premises for ethnicity-specific health research; the organisation and ethnic and racial labelling of the data; and the discussion of new research findings in comparison with previous ethnicity-specific research. Ultimately, our analysis illustrates that, in health research and publications, ethnicity and its relation to health are not simply discovered or found; rather we discuss how the manner in which ethnicity and specific categories of ethnicity are enacted is contingent upon these everyday dynamics of research practices and the specific research situation in which research takes place.

The Affordable Care Act, which expanded health insurance coverage to millions of Americans and federally mandated the provision of health insurance to individuals with “pre-existing conditions,” is a politically divisive law facing an ongoing ‘repeal and replace’ effort in Congress. As patients, caregivers, and health activists fight to resist the repeal of the ACA, they are sharing intimate illness narratives in an effort to frame the repeal effort as a looting of their insurance benefits and an attack on the investment in equity and justice they say the ACA represents. Drawing on a discourse analysis of primary documents from the U.S. Department of Health and Human Services and illness narratives shared by the Service Employees International Union’s Fight For Our Health activist campaign, this article examines how the illness narrative is deployed here as a political call to action. I consider how this resistance effort frames the inevitability of illness and the emotional burdens of what I call ‘health insurance precarity,’ or the uncertainty that defines the experience of being uninsured, as a justification for positioning health activism as a cultural and political obligation shared by all.

Umbilical cord blood has proved an effective substitute for bone marrow in the treatment of blood disorders, and most nations in the developed world have public programmes for the harvesting and storage of cord blood for allogenic transplantation. Private cord blood banks have sprung up alongside public banks, offering parents the opportunity to bank their child's cord blood for later personal use. Private cord blood banking has been largely condemned by bioethical and medical professional bodies, on the grounds that the likelihood of any particular individual needing a cord blood transplant is very low, and that public, redistributive banking is a more efficient use of resources. This article investigates the appeal of private cord blood banking in the face of such condemnation, and the social norms implied in public and private cord blood banking. It locates cord blood banking in the field of regenerative medicine, and considers the two different models of biological regeneration implied in public, gift-based banking and private, autologous banking. In the first case, regeneration of sick bodies is an effect of social redistribution and intercorporeal generosity between citizens. In the second, regeneration is promised by the retention of cord blood as a form of personal property. The private cord blood account appeals to certain neoliberal norms of entrepreneurial embodiment, acting as a kind of asset or venture capital invested in the future of biotechnological innovation.

The objective of this article is to explore the views of Dutch cancer patients on the use of excised and stored (tumor) tissues in medical research. Excised tissues are routinely stored in hospitals for future diagnostic use. They are also important for scientific research. This article discusses and interprets concepts of ‘ownership’ in the context of the increasing scientific and commercial value of tissues. We used a mixed-methods design combining quantitative data (questionnaires) with qualitative data (interviews) and observations during an intervention study. Our analysis suggests that, for patients, the stored tissue is a hypercollective good that should remain in the public sphere in order to facilitate research. The tissue is seen as connecting the donor to relatives and other patients, the hospital, and to the larger scientific community. The respondents expressed a preference for an ongoing relationship with the tissue custodian. A substantial minority of respondents consider themselves to be owners of the tissue. Notably, tumour tissue is perceived as unique and special. Patients endorse the use of extracorporeal tissue removed during medical care in scientific research. They expect reciprocity from the tissue custodian in the form of information about findings.

Receiving a positive test result for a BRCA mutation is a life-altering event. Thrust into a biomedical category of “high-risk” for developing breast and ovarian cancer, unaffected BRCA-positive women confront decisions about how to manage their risk. The knowledge provided through the use of genetic testing burdens women with having to make crucial decisions in a context of great uncertainty. Using 25 semi-structured interviews, this paper examines how women make decisions about how to manage their health after learning about a BRCA mutation. We situate the biographies of these women in the context of neoliberal expectations about personal responsibility for health and gender norms, and argue that the intersection of these imperatives plays out in unique ways depending on an individual’s life-stage, resulting in stratified decision-making. For older women who are married and have children, gender and health expectations neatly align. However, for younger, single women without children, the normative expectations about gender and health management often conflict, resulting in the prioritization of gender imperatives over health expectations, albeit temporarily. The analysis concludes with a discussion of the implications of BRCA testing for women and their experiences of choice and decision-making as well as their resistance to preventative surgeries.

In 1952, the French anthropologist Claude Lévi-Strauss published a small booklet titled Race and History. It formed part of a series of pamphlets on the so-called ‘race-question’ by leading anthropologists and geneticists, which UNESCO published as part of its campaign against racism. Roughly 20 years later, in 1971, UNESCO invited Lévi-Strauss's to give a lecture to open the International Year of Action to Combat Racism and Racial Discrimination. This time the lecture, titled ‘Race and culture’, caused a scandal. In 2005, on occasion of the Organisation's sixtieth anniversary, Lévi-Strauss was once again invited by UNESCO to give a lecture. It followed the same lines as his 1971 speech, but now met with acclaim. In my paper I will analyse Lévi-Strauss’s interventions with respect to their reliance on contemporary genetics. Lévi-Strauss always saw a close analogy between structuralist anthropology and genetics, and derived his anti-evolutionary stance from the combinatory logic that both disciplines endorsed. I will argue, that it was this combinatory logic which created room for historical contingency and agency in Lévi-Strauss’s understanding of the history of humankind.