Klasien Horstman

Detecting familial hypercholesterolaemia : escaping the family history?

Over time, family life has lost ground in Western societies. Migration, fewer children per family, the emancipation of women and children, the rise of the number of divorces and other factors have contributed to a process of individualization, which, at least in Western Europe, has caused family bonds to grow less important (NWO 2003). In response to the question ‘who am I?’, fewer people are likely to refer to the family in which they were raised as the defining factor, while more will point to their own particular choices and achievements. Most look at themselves primarily as an individual rather than as a family member. In combination with this development, the naturalness of the family bond and contact among relatives — out of a sense of duty or habit — has increasingly been replaced with a preference for self-chosen contacts. With some relatives, one is in touch, but other relatives one rarely meets if at all.

Engineering flesh: towards an ethics of lived integrity.

The objective of tissue engineering is to create living body parts that will fully integrate with the recipient’s body. With respect to the ethics of tissue engineering, one can roughly distinguish two perspectives. On the one hand, this technology is considered morally good because tissue engineering is ‘copying nature’ On the other hand, tissue engineering is considered morally dangerous because it defies nature: bodies constructed in the laboratory are seen as unnatural. In this article, we develop a phenomenological-ethical perspective on bodies and technologies, in which the notion ‘lived body’ and concrete experiences of health and illness play an important role. From that perspective, we analyse the practice of tissue engineering by focussing on one specific example: the engineering of heart valves. On the basis of this analysis, we propose that the ethics of tissue engineering should be framed not in terms of ‘natural’ or ‘unnatural’ but in terms of ‘good embodied life’ and ‘lived integrity’

Lifestyle, Genes and Cholesterol: New Struggles about Responsibility and Solidarity

Since the start of the Human Genome Project there has been much speculation on the impact of this mega-research project on medicine and health care. Various authors have argued that growing attention on the genetic factors in the emergence of diseases will lead to their geneticization: it would define diseases increasingly in terms of DNA (Ten Have, 2001). Geneticization, according to the sociologist Lippman, means ‘the ongoing process by which priority is given to differences between individuals based on their DNA codes, with most disorders, behaviours and physiological variation & structured, at least in part, hereditary’ (Lippman 1993, p. 178). Several authors fear that the rise of this genetic perspective will result in a devaluation of social or cultural approaches to health and disease. After all, if genes are decisive in determining the boundary between pathology and health, is there still any relevancy to social or cultural explanations for health or disease? Will there be room left for individual meanings of health and disease? The geneticization thesis implies the expectation that on account of the increased usage of genetic tests, people are tied to their biological fate and that their freedom to fashion their own lives is seriously threatened.

Learning from the Work that Links Laboratory to Society

The introduction of genetic testing raises major questions for society, as not only opponents but also proponents of the new techniques acknowledge. Most of these questions are fairly easy to formulate. Which tests are socially acceptable, or even desirable, and which ones have to be rejected? How will detailed knowledge of individual health risks affect the way we organize our lives and make choices in relation to work, diet and lifestyle? What about insurance? How does knowledge of genetic risks affect the way in which society perceives disease and disability? Should we expect a shift in the balance between, on the one hand, individual responsibility for health and, on the other hand, solidarity with those who are ill or disabled or who have a high chance of developing a serious disorder? And if the projected future is not of our liking, what can be done to steer developments in predictive medicine in another direction? Who is in a position to judge with authority on these matters, and who is in a position to take political initiatives if they are needed?