«If you give them your little finger, they’ll tear off your entire arm» : losing trust in biobank research

publishedVersio

Could screening participation bias symptom interpretation? An interview study on women's interpretations of and responses to cancer symptoms between mammography screening rounds

Objectives: To explore how women with negative mammography screening results, but who were later diagnosed with interval breast cancer, reacted when they observed breast symptoms that could indicate malignancy in-between screening rounds. Design: Semistructured individual interviews with women who have been diagnosed with breast cancer during mammography screening intervals. Setting: Two breast diagnostic units covering two counties in Norway. Participants: 26 women diagnosed with interval breast cancer. Results: Women with a screening negative result react in two ways when experiencing a possible symptom of breast cancer. Among 24 women with a self-detected palpable lesion, 14 sought medical advice immediately. Their argument was to dispose of potential cancer as soon as possible. Ten women delayed seeking medical advice, explaining their delay as a result of practical difficulties such as holidays, uncertainty about the symptom, and previous experiences of healthcare services’ ability to handle diffuse symptoms. Also, a recent negative mammography scan led some women to assume that the palpable lesion was benign and wait for the next screening round. Conclusions: Participating in mammography screening may contribute to a postponed reaction to breast cancer symptoms, although most women acted rapidly when detecting a palpable breast lesion. Furthermore, screening participation does not necessarily increase awareness of breast cancer symptoms.This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode

Pregnancy and substance use - the Norwegian § 10-3 solution : ethical and clinical reflections related to incarceration of pregnant women to protect the foetus from harmful substances

Abstract Aims This article highlights ethical and clinical dilemmas of incarceration of pregnant drug addicts mandated by z 10–3 of the Norwegian Municipal Health and Care Services act. Material The material consists of two cases, Siri and Anna, and the ethical dilemmas posed by the use of z 10–3 in these cases. Methods Semi-structured in-depth individual interviews were conducted, audio-recorded and transcribed word for word. Transcripts were coded according to converging interests and possible ethical dilemmas and described in a case format. The practical and experiential consequences of the law are discussed in relation to the four main bioethical principles: respect for autonomy, non-maleficence, beneficence and social justice. These are supplemented by the principles of relational ethics. Results The application of z 10–3 may lead to situations which distort the psychological preparation for parenthood and strains the helping relationship. The four principles approach seems to be an insufficient tool in grasping the complexity of the situation. Conclusions Interventions to protect the foetus from the pregnant woman's use of substances demand elevated professional awareness of ethical and relational challenges and dilemmas. Relational ethics provides a framework to enhance reflexivity and a trusting therapeutic alliance. The potential for psychological change during pregnancy should be invested in. Hence, we suggest that during incarceration according to z 10–3, foetal protection and the promotion of parental competences should be given equal priority.publishedVersio

Online risk numbers -helpful, meaningless or simply wrong? - Reflections on online risk calculators

Among the instruments offered to citizens via digital media are risk calculators, aiming at identifying individuals at high risk of various diseases. These calculators present us with both epistemological and socioethical challenges. Tracking the history of individual risk models, this article provides an analysis looking into their content, construction, use and functions. Epistemologically, the notion of risk factor epidemiology frames an approach to public health that goes through the identification of high-risk individuals, providing a way of making public health doable without involving social, cultural and economical factors in the risk assessments. Instead, ethnicity is included in many calculators, serving as boundary objects that enable epidemiologist to avoid addressing its inherent epistemological challenges. Through this notion of individual risk, a discourse is created that provides us with the narrative of the empowered vulnerable global citizen, which is given room to look after her or his risky self, while ignoring the structural and political factors influencing it. In doing so, flawed calculator construction provides ample risk of getting the wrong number.acceptedVersion© 2019. This is the authors' accepted and refereed manuscript to the article. The final authenticated version is available online at: https://doi.org/10.1177/136345931982618

FOR BETTER, FOR WORSE: CRITICAL REFLECTIONS ON RISK, MEDICALIZATION AND OSTEOPOROSIS

Preventive medicine comes with the potential for making our lives both better and worse. In this thesis reflections around this situation are offered, supported by empirical research. The reflections are offered from a social constructionist position. Three themes are covered – the concept of risk in medicine, medicalization and osteoporosis. The study is based on six sub-studies applying a mix of qualitative methods. It covers data sets from medical literature databases, newspaper articles and focus groups. Among the findings of the study is the risk epidemic in medical literature, which has hitherto been found to peak in the first decade of the 21st century. Furthermore, the development of the medical understanding of osteoporosis has been traced, showing how the introduction of medical technology transformed it into a risk factor available for risk reducing interventions. The introduction of such reductions through chemoprevention was subject to controversy, and this controversy has been analysed through the newspaper coverage of what became known as the Fosamax-case. Knowledge of osteoporosis among women in Nord-Trøndelag has furthermore been shown to be based on everyday experiences wherein falling has become the ultimate test of osteoporosis. The experience of screening for osteoporosis among the same women illustrates that the medical definition of osteoporosis made little sense to them. Variation in risk categorization and measurement technology contributed to confusion over the test outcomes, as did the communication of test results as standard deviations. In the last paper reflections are offered on whether the pathologization of normality presents a possibility for unlimited medicalization. These findings show how modern information technology paired with the idea of risk in medicine has prepared the ground for the medicalization of everyday life. The medicalization of osteoporosis is described as happening three times over, through the medicalization of everyday life, the medicalization of menopause and the specific medicalization of osteoporosis. Bone density measurements are described as a crucial ingredient in the medicalization of osteoporosis, alongside chemoprevention. Recent developments show that bone density measurements may come to play a minor role in the future, however. Among the limits of medicalization are what in medical terms is described as lack of risk awareness and knowledge of osteoporosis, alongside a reluctance to take chemoprevention as a measure for reducing the risk of fractures. These limits to medicalization are unintended, however, unlike earlier feminist resistance against the medicalization of menopause. The consequences of screening for osteoporosis show that it has a reassuring effect on the women told that their bone density is OK, whereas for others it is a source of confusion. For some it also has the effect of demonstrating the frailty of their bodies

The risk epidemic in medical journals

Searches in MEDLINE databases show a rapid increase in the number of articles with the term 'risk(s)' in the title and/or abstract in the period from 1967 to 1991. This trend is found in medical journals giving a general coverage of medicine and journals covering obstetrics and gynaecology in U.S.A., Britain and Scandinavia. The most rapid increase is, however, found in epidemiological journals. Comparisons of the developments in the occurrence of such terms as risk, hazard, danger and uncertainty show that the increasing frequency of the term risk in the medical literature can not be explained as a change in terminology alone. It is hypothesized that the ongoing trend, which resembles an epidemic, is a result of developments in science and technology, that has changed our beliefs about the locus of control from factors outside human control to factors inside our control. The origins of the epidemic may be traced to the development of such disciplines as probability statistics, increased focus on risk management and health promotion, with recent developments in computer technology as the factor responsible for the escalation seen in the past decade. With the cultural selection of risks in mind, the social construction of risk is discussed. Potentially harmful effects of such an epidemic are discussed, exemplified through controversies over current epidemiological risk construction and strategies for coronary risk reduction. It is finally argued that the risk epidemic reflects the social constructions of a particular culture at a particular time in history.risk epistemology epidemiology health promotion risk management

Surge in publications on early detection

Articles in the medical literature on early detection tend to focus on benefits rather than harms, but does evidence on outcomes warrant this difference ask Bjørn Hofmann and John-Arne Skolbekken.publishedVersio

Pregnancy and substance use - the Norwegian § 10-3 solution : ethical and clinical reflections related to incarceration of pregnant women to protect the foetus from harmful substances

Abstract Aims This article highlights ethical and clinical dilemmas of incarceration of pregnant drug addicts mandated by z 10–3 of the Norwegian Municipal Health and Care Services act. Material The material consists of two cases, Siri and Anna, and the ethical dilemmas posed by the use of z 10–3 in these cases. Methods Semi-structured in-depth individual interviews were conducted, audio-recorded and transcribed word for word. Transcripts were coded according to converging interests and possible ethical dilemmas and described in a case format. The practical and experiential consequences of the law are discussed in relation to the four main bioethical principles: respect for autonomy, non-maleficence, beneficence and social justice. These are supplemented by the principles of relational ethics. Results The application of z 10–3 may lead to situations which distort the psychological preparation for parenthood and strains the helping relationship. The four principles approach seems to be an insufficient tool in grasping the complexity of the situation. Conclusions Interventions to protect the foetus from the pregnant woman's use of substances demand elevated professional awareness of ethical and relational challenges and dilemmas. Relational ethics provides a framework to enhance reflexivity and a trusting therapeutic alliance. The potential for psychological change during pregnancy should be invested in. Hence, we suggest that during incarceration according to z 10–3, foetal protection and the promotion of parental competences should be given equal priority