Frictionless expectations: when bioethics travels to Serbia

Over the last seven years, the European Union (EU) has promoted the institutionalization of bioethics in Serbia as part of EU citizenship. This paper looks at what it is about bioethics that makes it possible to take its universal application for granted and why are actors such as the Consul of Europe invested in transporting bioethics from their origins in the United States and Western Europe to Serbia. I start by examining discourse around institutionalized bioethics that makes transplanting of its ideas and practices appear unproblematic. Drawing on the concept of audit cultures and looking at bioethics as an audit mechanism, I show how promoting bioethics becomes an ethical end in itself. Finally, I consider how Westerners have historically construed Serbia as backwards, savage, and violent. I suggest that promoting bioethics as a condition of EU citizenship might be a means of making ethical subjects or of civilizing Serbia

Reframing Conscientious Care: Providing Abortion Care When Law and Conscience Collide

While the concept of conscience has broad philosophical underpinnings relating to moral judgment, agency, and discernments of right and wrong, debates in bioethics have tended to engage the concept primarily vis-à-vis rights of conscientious refusal. Here, we suggest a broader frame for thinking about claims of conscience in healthcare. Drawing on empirical findings from our research with abortion providers in North Carolina, we elucidate an empirically grounded approach to ethically justified care when healthcare providers face legal or institutional policy mandates that raise possible moral conflicts. We highlight, in particular, how providers may be motivated by matters of conscience, including relational concerns, in the active provision of certain forms of care. In so doing, we challenge the dichotomy between conscientious refusal and morally compromised action, demonstrating how providers may work within the constraints of laws or institutional policies that raise moral challenges and act in accordance with conscience

“Forward-Thinking” in U.S. Biobanking

Aims: Do biobanks enact policies and plans that allow them to anticipate and respond to potential challenges? If a biobank has one such policy or plan, is it likely to have more? Using survey data from 456 U.S. biobanks, we assess four possible indicators of such “forward-thinking.

Neglected Ethical Issues in Biobank Management: Results from a U.S. Study

Abstract The empirical literature on the ethical, legal, and social implications (ELSI) of biobanking has almost entirely relied on the perspectives of those outside of biobanks, such as the general public, researchers, and specimen contributors. Little attention has been paid to the perspectives and practices of those who operate biobanks. We conducted a study of U.S. biobanks consisting of six in-depth case studies and a large online survey (N = 456), which was developed from the case study results. The case studies included qualitative interviews with a total of 24 personnel. Both interview and survey questions focused on how biobanks operate, and what policies and practices govern their relationships with specimen contributors and the researchers who use the specimens. Analysis revealed unexpected ethical dilemmas embedded in those policies and practices that highlight a need for practical planning. In this paper, we review three issues seldom explored in the ELSI literature: 1. the discrepancy between biobankers’ hope that the bank will exist “permanently” and the fact that funding is limited; 2. the lack of planning for what will happen to the specimens if the bank closes; and 3. the concern that once collected, specimens may be underutilized. These dilemmas are missing from current public representations of biobanks, which instead focus on the intrinsic value in storing specimens as essential to the advancement of translational research. We argue that attention to these issues is important for biobanking, and that greater transparency of these policies and practices will contribute to promoting public trust in biobanks

“Forward-Thinking” in U.S. Biobanking

Aims: Do biobanks enact policies and plans that allow them to anticipate and respond to potential challenges? If a biobank has one such policy or plan, is it likely to have more? Using survey data from 456 U.S. biobanks, we assess four possible indicators of such “forward-thinking.” Methods: We present response frequencies and cross-tabulations regarding policies for return of results and ownership of specimens, and for having a formal business plan and a plan for what happens to specimens if the biobank closes. We analyze the relationships among these indicators, using chi-square for tests of statistical significance. Results: Policies—Sixty-two percent of biobanks have a policy about returning individual research results; 70% have a policy designating ownership of specimens and/or technology. Having these two policies is significantly related (p < 0.001). Plans—34% of biobanks have a formal business plan; 26% have a written plan for what will happen to the specimens if the biobank closes. Having these two plans is significantly related (p < 0.001). Relationships among indicators—only 7% of biobanks are forward-thinking across all four indicators; 12% are forward-thinking across none. Discussion: The two policies we examined tend to occur together, as do the two plans. These policies and plans seem to tap different aspects of accountability and responsiveness. Specifically, the policies reflect issues most commonly raised in the ethical and legal literature on biobanking, while the plans are indicators of sustainability, a separate area of concern in biobanking