John-Arne Skolbekken

Questions of culture, age and gender in the epidemiology of suicide

Cultural values were examined as predictors of suicide incidence rates compiled for men and women in six age groups for 33 nations for the years 1965, 1970, 1975, 1980, and 1985. Hofstedes cultural values of Power-Distance, Uncertainty Avoidance, and Masculinity (i.e., social indifference) were negative correlates of reported suicide, and Individualism was a strong positive correlate. The proportion of variance in suicide reports generally related to these four cultural values was R2 = 0.25. Suicide by women and by middle-aged people was most related to cultural values, even though international variance in suicide is greater for men and for the elderly. Suicide incidence for girls and young women showed unique negative correlations with Individualism. For all age groups, Individualism predicted a greater preponderance of male suicides, and Power-Distance predicted more similar male and female suicide rates. Social alienation and Gilligans feminist theory of moral judgment were hypothesized to explain some gender differences.

Not worth the paper it's written on? Informed consent and biobank research in a Norwegian context

In January 2003 the Norwegian Parliament passed the Biobanks Act, regulating biobank research in Norway. There have been strong differences of opinion both in the process of making the law as well as in its first years of implementation. The main controversy relates to what kind of informed consent should be required for biobank research. Central to the controversy over current interpretations of the Biobanks Act is the informed consent given by the donors to the biobank of the Nord-Trøndelag Health Study (HUNT), and whether the consent given ‘was worth the paper it was written on’. This article traces the history behind the informed consent procedure of the blood samples in the largest research biobank in Norway, the HUNT biobank. Second, findings from a focus group study with biobank participants are presented. Third, a philosophical analysis is made of the concept of informed consent in light of the findings from the focus-group study as well as the history behind the HUNT biobank. Findings from the focus-group study show that the consenters base their participation on trust in the researchers and the regulation of research in Norwegian society, rather than on specific information on the research in question. The history behind the HUNT biobank fosters trust. The story provides a strong case for not limiting the debate to legalistic and formalistic ethics but also including a research ethics that says that process and trust matter. Otherwise no informed consent in medical research is worth the paper it is written on.

Challenges of informed choice in organised screening

Context: Despite much research on informed choice and the individuals’ autonomy in organised medical screening, little is known about the individuals’ decision-making process as expressed in their own words. Objectives: To explore the decision-making process among women invited to a mammography screening programme. Setting: Women living in the counties of Sør- and Nord-Trøndelag, Norway, invited to the first round of the Norwegian Breast Cancer Screening Program (NBCSP) in 2003. Methods: Qualitative methods based on eight semistructured focus-group interviews with a total of 69 women aged 50–69 years. Results: The decision to attend mammography screening was not based on the information in the invitation letter and leaflet provided by the NBCSP. They perceived the invitation letter with a prescheduled appointment as if a decision for mammography had already been made. This was experienced as an aid in overcoming the postponements that easily occur in daily lives. The invitation to mammography screening was embraced as an indication of a responsible welfare state, “like a mother taking care.” Conclusion: In a welfare state where governmental institutions are trusted, mass screening for disease is acknowledged by screening participants as a valued expression of paternalism. Trust, gratitude, and convenience were more important factors than information about benefits, harms, and risks when the women made their decisions to attend screening. These elements should be included in the ethical debates on informed choice in preventive medicine.

We're not in it for the money—lay people's moral intuitions on commercial use of 'their' biobank

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.

Experiences of Recall After Mammography Screening—A Qualitative Study

Women participating in biannual mammography screening for 20 years have a cumulative risk of 20% of being recalled. We conducted a prospective qualitative interview study with eight nonsymptomatic women recalled after mammography screening. These women expressed mixed emotions over being recalled. Information about recall rates and breast cancer risk was seen as alarming, and cancer risk estimates were seen by some as high. The short time between recall and examination was reassuring, but it was also perceived as an indication of malignancy. Despite distress from examinations, most of the women continued to want medical examinations to detect cancer early.

Mammography screening and trust: The case of interval breast cancer

Interval cancer is cancer detected between screening rounds among screening participants. In the Norwegian Breast Cancer Screening Programme, 19 per 10,000 screened women are diagnosed with interval cancer. We conducted semi-structured interviews with 26 such women. The women interpreted their interval breast cancer in two ways: that mammography can never be completely certain, or as an experience characterized by shock and doubts about the technology and the conduct of the medical experts. Being diagnosed with interval cancer thus influenced their trust in mammography, but not necessarily to the point of creating distrust. The women saw themselves as exceptions in an otherwise beneficial screening programme. Convinced that statistics had shown benefits from mammography screening and knowing others whose malignant tumours had been detected in the programme, the women bracketed their own experiences and continued trusting mammography screening. Facing a potentially lethal disease and a lack of alternatives to mammography screening left the women with few options but to trust the programme in order to maintain hope. In other words, trust may not only be a basis for hope, but also a consequence of it.

Brittle bones, pain and fractures - Lay constructions of osteoporosis among Norwegian women attending the Nord-Trøndelag Health Study (HUNT)

Osteoporosis has been labelled the disease of the 21st century. Over the past couple of centuries there have been various notions of this disease in medicine. In the present medical discourse, the emphasis is on prevention rather than treatment, making osteoporosis into a major risk factor for bone fractures. In Norway, osteoporosis is a particularly prevalent condition, leading to bone mass measurements being included in several large health surveys. In a follow-up study of the second round of the Nord-Trøndelag Health Study (HUNT), women aged 55-75 years were invited to participate in focus groups to talk about their experiences in relation to their bone density measurements. Findings from these focus groups show that osteoporosis is perceived as a disease characterized by brittle bones, pain and fractures. The physical appearance of a hunchbacked old woman is a dominant way of portraying the disease. It is mainly perceived as prevalent among women, but evidence that men can get it is provided through the example of a famous male athlete who became osteoporotic. Causal explanations for the disease are dominated by culturally shaped anecdotal evidence wherein medical knowledge has been included. Limits to lay constructions of osteoporosis based on such evidence are discussed. Talking about osteoporosis across generations the women applied different explanations for the condition over time. In doing so, they also showed that they have adopted the morality of the new public health where the individual has control over her health through self-governance. Whereas this was no option for their grandmothers, their grandchildrens generation was seen as one failing to meet their obligations to become healthy citizens. The lay construction of osteoporosis can thus be seen as one that has developed from a situation where osteoporotic persons were perceived as victims of harsh circumstances to one of individual responsibility.

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

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 womans 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.

Risk categorisation through standard deviations – the challenge of bone density measurements: A focus group study among women attending the Nord-Trøndelag Health Study (HUNT)

Bone density measurements play an important part in the categorisation of osteoporosis as a risk factor in modern medicine. According to the World Health Organization, people are categorised as having osteoporosis when their bone mineral density (BMD) value is 2.5 standard deviation (SD) below the young adult mean value, and as having osteopenia when the value lies between one and 2.5 SDs below the young adult mean value. The categorisation according to SDs makes osteoporosis a rather unique case within the medical world of risk definitions. We invited women who had their bone mass scanned in the Nord-Trøndelag Health Study (HUNT) to participate in focus groups and share their scanning experiences. Nine groups of women met three times for a total of 27 focus group discussions. Our findings illustrate that having their BMD measured contributed to a substantial confusion, related in particular to feedback given as SDs, the choice of reference populations and the body sites chosen for BMD. Some of the women had had their BMD measured at different health institutions using different reference groups, which resulted in women being told that they were osteoporotic at one institution, but not at the other. As the different institutions also scanned various body sites, including the wrist, hip and spine, the women were also confused about what site(s) provides the best information about their bone status. Overall this study shows that osteoporosis presents us with a particularly challenging example of risk categorisation.

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.