Maartje Schermer

Ethics in technological culture: a programmatic proposal for a pragmatist approach.

Neither traditional philosophy nor current applied ethics seem able to cope adequately with the highly dynamic character of our modern technological culture. This is because they have insufficient insight into the moral significance of technological artifacts and systems. Here, much can be learned from recent science and technology studies (STS). They have opened up the black box of technological developments and have revealed the intimate intertwinement of technology and society in minute detail. However, while applied ethics is characterized by a certain “technology blindness,” the most influential approaches within STS show a “normative deficit” and display an agnostic or even antagonistic attitude toward ethics. To repair the blind spots of both applied ethics and STS,the authors sketch the contours of a pragmatist approach. They will explore the tasks and tools of a pragmatist ethics and pay special attention to the exploration of future worlds disclosed and shaped by technology and the management of deep value conflicts inherent to a pluralist society.

Ethical issues in deep brain stimulation

Deep brain stimulation (DBS) is currently used to treat neurological disorders like Parkinsons disease, essential tremor, and dystonia, and is explored as an experimental treatment for psychiatric disorders like major depression and obsessive compulsive disorder. This mini review discusses ethical issues in DBS treatment and research, as they have been discussed in the medical and ethical literature. With regard to DBS treatment, the most important issues are balancing risks and benefits and ensuring respect for the autonomous wish of the patient. This implies special attention to patient selection, psycho-social impact of treatment, effects on personal identity, and treatment of children. Moreover, it implies a careful informed consent process in which unrealistic expectations of patients and their families are addressed and in which special attention is given to competence. In the context of research, the fundamental ethical challenge is to promote high-quality scientific research in the interest of future patients, while at the same time safeguarding the rights and interests of vulnerable research subjects. Several guidelines have been proposed to ensure this. One of the preconditions to further development of responsible and transparent research practices is the establishment of a comprehensive registry.

Pragmatist Ethics for a Technological Culture

Our technological culture has an extremely dynamic character: old ways of reproducing ourselves, managing nature and keeping animals are continually replaced by new ones; norms and values with respect to our bodies, food production, health care and environmental protection are regularly being put up for discussion. This constantly confronts us with new moral problems and dilemmas. In discussion with other approaches this book argues that pragmatism, with its strong emphasis on the interaction between technology and values, gives us both procedural help and stresses the importance of living and cooperating together in tackling these problems and dilemmas. The issues in this book include the interaction of technology and ethics, the status of pragmatism, the concept of practice, and discourse ethics and deliberative democracy. It has an interactive design, with original contributions alternating with critical comments. The book is of interest for students, scholars and policymakers in the fields of bioethics, animal ethics, environmental ethics, pragmatist philosophy and science and technology studies.

Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

BackgroundAs genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of personal utility.SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility.

The role of disease characteristics in the ethical debate on personal genome testing

BackgroundCompanies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests.DiscussionIn this paper, we identify and discuss four disease characteristics - severity, actionability, age of onset, and the somatic/psychiatric nature of disease - and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions.SummaryWe conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.

Ideals Regarding a Good Life for Nursing Home Residents with Dementia: views of professional caregivers

This study investigates what professional caregivers working in nursing homes consider to be a good life for residents suffering from dementia. Ten caregivers were interviewed; special attention was paid to the way in which they deal with conflicting values. Transcripts of the interviews were analysed qualitatively according to the method of grounded theory. The results were compared with those from a similar, earlier study on ideals found in mission statements of nursing homes. The concepts that were mentioned by most interviewed participants as important for a good life were ‘peace and quiet’, ‘going along with subjective experience’ and ‘no enforcement: the way the resident wants it’. A considerable overlap was found between the interviews and the mission statements; however, when compared with the mission statements, the interviews put less emphasis on individuality and on giving meaning, and more on offering residents pleasant activities. When faced with conflicting values, caregivers tend to make pragmatic and more or less intuitive decisions. Although this has its merits, it may be desirable to stimulate conscious reflection regarding conflict between different values.

Ethics in a technological culture

The Communist Manifesto (1848) could be read as a preamble to our present technological culture. In it, Marx and Engels conclude, with scarcely concealed admiration, that during its short period of domination, the bourgeoisie has brought together productive forces on a vaster, more massive scale than all of the previous generations combined. As a result, society has taken on an extremely dynamic character. “All fixed, fast frozen relations, with their train of ancient and venerable prejudices and opinions, are swept away, all new-formed ones become antiquated before they can ossify. All that is solid melts into air, all that is holy is profaned, and man is at last compelled to face with sober senses his real condition of life and his relations with his kind” (Marx and Engels, 1969). Elsewhere, in The Poverty of Philosophy (1847), Marx summarized his view of the relationship between technology and society concisely with the following words: “The hand-mill gives you society with the feudal lord; the steam-mill, society with the industrial capitalist” (Marx, 1982: 109).

Changes in the Self: The Need for Conceptual Research Next to Empirical Research

Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., and Gornbein, J. 1994. The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia. Neurology 44(12): 2308–2314. Duggan, P. S., Siegel, A. W., Blass, D. M., et al. 2009. Unintended changes in cognition, mood, and behavior arising from cell-based interventions for neurological conditions: Ethical challenges. American Journal of Bioethics (AJOB Neuroscience) 9(5): 31–36.

Pragmatism as a research program-a reply to Arras

This paper is a reaction to an article by John Arras published earlier in this journal. In this article Arras argues that “freestanding pragmatism” has little new to offer to bioethics. We respond to some of Arras arguments and conclude that, although he overstates his case at certain points, his critique is, broadly speaking, correct. We then introduce and discuss an alternative approach to pragmatist ethics, one which puts to work the ideas and insights of pragmatism conceived as a broad philosophical movement, without lapsing into a canon dependent approach. The approach we propose exhibits a number of characteristics that differ from Arrassaccount of freestanding pragmatism and offers something new to bioethics.

Pragmatism in Action.

In this concluding chapter we will elaborate on our proposal for a pragmatist approach with regard to the moral problems and conflicts that are typical of a (dynamic and pluralist) technological culture. In the first section we will review the most important issues that came up during the workshop and that are present in the various contributions. In the second section we will further discuss the usefulness of pragmatism to ethics in a more concrete fashion, by assessing the possible and desirable roles or tasks of pragmatist ethics. In the third section we will further elaborate and adapt the “instruments” we introduced in the prologue.