Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a (...) remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation. (shrink)

A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research, it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual (...) research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants. (shrink)

At the dawn of the twenty-first century, osteoporosis is described as a major public health problem of pandemic proportions, affecting millions of people, and women in particular, around the globe. This situation is frequently described as a result of an aging population, but it is also a consequence of a substantial transformation of the medical understanding and definition of osteoporosis in the latter half of the twentieth century. In this article, the authors trace the transformation of a biologically based understanding (...) of the condition involving a few patients, to the current statistically based definition of osteoporosis from which only a few remain untouched. At the center of this development is the measurement of bone mineral density through densitometrics, combining the use of imaging techniques and statistical epidemiology. (shrink)