Listen Publications
This is a selection of publications by researchers active at CRB. For more publications, please visit our the staff pages.
Review: We have a Religion. The 1920s Pueblo Indian Dance Controversy and American Religious Freedom by Tisa Wenger
Svalastog AL, Marburg Journal of Religion, Vol 16, 2011;1:1-4
The Sámi are just like everyone else? A scientist of religion looks at the encounter between the Christian missionary religion and the Sámi ethnic religion
Svalastog AL, in: Uppsala mitt i Sápmi, Report from Symposium by Föreningen för samiskrelaterad forskning i Uppsala, Upplandsmuseet 4-5 May 2011, eds: Tunón H, Frändén M, Ojala CG & Öhman MB, CMB:s skrifserie 55, 2011:22-27.
Patientsäkerhet och kvalitetssäkring i svensk hälso- och sjukvård: En medicinrättslig studie
Axelsson E, Iustus förlag, SJFU Skrifter från juridiska fakulteten i Uppsala 119, 2011.
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This thesis analyzes the Swedish quality assurance system from a legal perspective. Point of departure is the goals and demands in Swedish health care law followed by the responsibility of the different actors involved. Some of the actors are health care providers, health professionals, the national Board on Health and Welfare (Socialstyrelsen) and the medical responsibility board (HSAN). |
Biobank research: Who benefits from individual consent?
Stjernschantz Forsberg J, Hansson MG, Eriksson S, BMJ2011;343:d5647
Abstract: Requiring informed consent for research on stored tissue samples and associated data safeguards the autonomy rights of donors. But the authors argue that this policy not only defeats the interest of society but also runs counter to the interests of the individuals it purports to protect.
Biobanking Within the European Regulatory Framework: Opportunities and Obstacles
Hansson MG, Biopreservation and Biobanking 2011;9(2):165-167
Abstract: A common feature of the European ethical and legal regulatory framework is that biobank-based research has a significant potential of providing new benefits to European citizens in terms of new medical treatment, and this research is therefore something that should be promoted. At the same time the legislatures are concerned, and rightly so, about the integrity of patients and healthy volunteers who provide samples and data. There is now ample evidence of how biobank-based research has provided great opportunities for new care. At the same time there are a growing number of reports about rash judgments about integrity by ethical review boards and data inspection authorities that are not in the best interest of patients. It is here argued that legislatures, ethical review boards, and data inspection authorities need to adopt a wider view of integrity and take into consideration the patients' interest in a sound scientific basis for medical diagnosis and treatment.
Is genetic counseling a stressful event?
Nordin K, Roshanai A, Bjorvatn C, Wollf K, Mikkelsen EM, Bjelland I, Kvale G, Acta Oncologica, 2011;50(7):1089-1097(9).
Abstract: Purpose. The aim of this paper was to investigate whether cancer genetic counseling could be considered as a stressful event and associated with more anxiety and/or depression compared to other cancer-related events for instance attending mammography screening or receiving a cancer diagnosis. Methods. A total of 4911 individuals from three Scandinavian countries were included in the study. Data was collected from individuals who had attended either cancer genetic counseling (self-referred and physician-referred) or routine mammography screening, were recalled for a second mammograpy due to a suspicious mammogram, had received a cancer diagnosis or had received medical follow-up after a breast cancer-surgery. Data from the genetic counseling group was also compared to normative data. Participants filled in the Hospital Anxiety and Depression Scale twice: prior to a potentially stressful event and 14 days after the event. Results. Pre-counseling cancer genetic counselees reported significant lower level of anxiety compared to the cancer-related group, but higher levels of anxiety compared to the general population. Furthermore, the level of depression observed within the genetic counseling group was lower compared to other participants. Post-event there was no significant difference in anxiety levels between the cancer genetic counselees and all other groups; however, the level of depression reported in the self-referred group was significantly lower than observed in all other groups. Notably, the level of anxiety and depression had decreased significantly from pre-to post-events within the genetic counseling group. In the cancer-related group only the level of anxiety had decreased significantly post-event. Conclusion. Individuals who attend cancer genetic counseling do not suffer more anxiety or depression compared to all other cancer-related groups. However, some counselees might need additional sessions and extended support. Thus, identifying extremely worried individuals who need more support, and allocating further resources to their care, seems to be more sufficient.
Health-related quality of life among women with breast cancer – a population-based study
Høyer M, Johansson B, Nordin K, Bergkvist L, Ahlgren J et al, Acta Oncologica, 2011;50(7):1-12
Abstract: Background. High incidence rates of breast cancer emphasize the importance of increased knowledge about the health-related quality of life (HRQoL) in this patient group. The aim of the present study was to describe and compare HRQoL among breast cancer patients shortly after diagnosis with normative data from the general population, and to investigate how clinical, demographic, and socio-economic factors and social support are associated with HRQoL. Material and methods. Participants were identified in a population-based Breast Cancer Quality Register in central Sweden. Of 1573 women newly diagnosed with breast cancer during a one-year period (2007 – 2008), 69% (n =1086) completed a questionnaire including the EORTC QLQ-C30, BR23 and the HADS. Results. Compared to age-adjusted normative data, breast cancer patients (mean age 62 years, range 25–94), especially younger women (<50 years), experienced clinically meaningful poorer HRQoL. Clinically significant levels of anxiety and depressive symptoms were found among 14% and 6% of the patients, respectively. Factors associated with more problems/symptoms among study participants included chemotherapy, lack of social support, sick leave and a poor financial situation. Adding socio-economic factors diminished the association between age and HRQoL (p > 0.05). Conclusion. Recently diagnosed breast cancer patients reported poorer HRQoL in several dimensions compared to normative data. In addition to clinical and demographic factors, an unfavorable socio-economic standing was associated with more problems/symptoms. The present findings emphasize the importance of taking a variety of factors into account when assessing HRQoL in the clinical setting.
Four Themes in Recent Swedish Bioethics Debates
Helgesson G, Eriksson S, Cambridge Quarterly of Heathcare Ethics, 2011;20:409-17.
Abstract: A wide variety of bioethical themes have recently been debated and researched in Sweden, including genetic screening, HPV vaccination strategies, end-of-life care, injustices and priority setting in healthcare, dual-use research, and the never- ending story of scientific fraud. Also, there are some new events related to Swedish biobanking that might be of general interest. This article concentrates on and gives a summary of four themes: end-of-life care, dual-use research, scientific fraud, and biobanking.
Cancellations of elective surgery may cause an inferior postoperative course: the ’Invisible hand’ of health care prioritization?
Magnusson, H, Felländer-Tsai, L, Hansson MG and Ryd, L, Clinical Ethics 2011;6(1):27-31.
Abstract: Elective surgery can be cancelled when resources are overwhelmed by emergency cases. We hypothesized that such cancellations, on psychological grounds, are followed also by inferior clinical results and we conducted a retrospective survey of patients following joint replacement surgery. Sixty patients having suffered from administrative cancellation prior to their operation during an 18-month period and with six months follow-up were identified and compared with another 60 matched patients after having the same type of surgery but without prior cancellation. All patients received questionnaires on complications and on visual analogue scale (VAS) assessment on subjective wellbeing and quality of life (QoL) at follow-up. The study group reported 50 complications versus 33 for controls (P < 0.03). A borderline significant difference was found for myocardial infarction, 4 versus 0 (P < 0.05). There was no difference in VAS registration and QoL measurements did not quite reach statistical significance (P = 0.06). Cancellations (postponements) of elective surgery for administrative reasons may be followed by inferior clinical results, and this merits further prospective study.
Challenges and opportunities of a new HPV immunization program - Perceptions among Swedish school nurses
Gottvall M, Tydén T, Larsson M, Stenhammar C, Höglund AT, Vaccine, 2011; 29 (28): 4576-4583.
Abstract: Aim: To investigate school nurses' perceptions of HPV immunization, and their task of administering the vaccine in a planned school-based program in Sweden. Method: Data were collected through five focus group interviews with school nurses (n=30). The interviews were recorded, transcribed verbatim and analyzed using content analysis. Findings: The theme Positive attitude to HPV immunization despite many identified problems and challenges summarizes the results. The school nurses saw the program as a benefit in that the free school-based HPV immunization program could balance out social inequalities. However, they questioned whether this new immunization program should be given priority given their already tight schedule. Some also expressed doubts regarding the effect of the vaccine. It was seen as challenging to obtain informed consent as well as to provide information regarding the vaccine. The nurses were unsure of whether boys and their parents should also be informed about the immunization. Conclusion: Although some positive aspects of the new HPV immunization program were mentioned, the school nurses primarily identified problems and challenges; e.g. regarding priority setting, informed consent, culture and gender. In order to achieve a good work environment for the school nurses, and obtain a high coverage rate for the HPV immunization, these issues need to be taken seriously, be discussed and acted upon.
Gene Doping and the Responsibility of Bioethicists
Atry A, Hansson MG, Kihlbom U, Sport, Ethics and Philosophy, 2011;5(2):149-160.
Abstract: In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.
The Risks and Benefits of Re-Consent
Stjernschantz Forsberg J, Hansson MG, Eriksson S, Science 2011;332(306).
Summary: In the article “Research practice and participant preferences: The growing gulf” (Science 331, 287-8 (2011)) S.B. Trinidad et. al. claim that the preferences of individuals are not respected when existing samples and data are used for new research purposes without obtaining consent, and that research practice needs to be reframed to align with participant interests.
In this commentary we argue that the authors’ view on these interests is too limited. Because all individuals share an interest in optimal healthcare and requiring consent may hamper research, observational research that imposes only diminutive risks can justifiably be carried out without consent.
A precautionary principle for dual use research in the life sciences
Kuhlau F, Höglund AT, Evers K, Eriksson S, A precautionary principle for dual use research in the life sciences, Bioethics, 2011;25:1-8.
Abstract: Most life science research entails dual-use complexity and may be misused for harmful purposes, e.g. biological weapons. The Precautionary Principle applies to special problems characterized by complexity in the relationship between human activities and their consequences. This article examines whether the principle, so far mainly used in environmental and public health issues, is applicable and suitable to the field of dual-use life science research. Four central elements of the principle are examined: threat, uncertainty, prescription and action. Although charges against the principle exist – for example that it stifles scientific development, lacks practical applicability and is poorly defined and vague – the analysis concludes that a Precautionary Principle is applicable to the field. Certain factors such as credibility of the threat, availability of information, clear prescriptive demands on responsibility and directives on how to act, determine the suitability and success of a Precautionary Principle. Moreover, policy-makers and researchers share a responsibility for providing and seeking information about potential sources of harm. A central conclusion is that the principle is meaningful and useful if applied as a context-dependent moral principle and allowed flexibility in its practical use. The principle may then inspire awareness-raising and the establishment of practical routines which appropriately reflect the fact that life science research may be misused for harmful purposes.
Etiska aspekter på att rutinmässigt fråga om erfarenheter av våld i nära relationer (Ethical aspects on screening for intimate partner violence)
Höglund AT, in: Att fråga om våldsutsatthet som en del i anamnesen. Uppsala: NCK Rapport, 2011;4:95-103.
Abstrakt: I kapitlet diskuteras centrala etiska frågeställningar i anslutning till att rutinmässigt tillfråga kvinnor om erfarenheter av våld i anamnesen. Slutsatsen är att om tillfrågandet om våld och övergrepp införs som en rutinmässig åtgärd i sjukvården, så ställs krav på adekvat etisk kompetens hos dem som ska fråga. Nyttan med ett rutinmässigt tillfrågande bör överväga riskerna med det, eftersom det dels kan leda till att kvinnor som utsätts för våld tidigt får hjälp och därmed förbättrad livskvalitet, dels kan minska antalet återbesök och felbehandlingar, vilket på sikt kan vara kostnadseffektivt för hälso- och sjukvården. Beträffande frågan om patienternas integritet understryks i kapitlet att i syfte att skydda integriteten hos de kvinnor som tillfrågas måste frågan ställas på ett mycket väl övervägt och genomtänkt sätt. Dessutom ska dokumentationen vara tydlig och informativ, i syfte att undvika skada för kvinnorna i mötet med hälso- och sjukvården, utan att för den skull stigmatisera de kvinnor som har erfarenhet av våld. Avslutningsvis kopplas dessa resonemang till frågan om etisk kompetens hos personalen, vilket hävdas vara en förutsättning för att de etiska kraven som framkommit i kapitlet ska kunna uppfyllas. Ansvaret för att en sådan kompetens utvecklas och upprätthålls ligger inte enbart på den enskilda vårdgivaren, utan även på lednings- och organisationsnivå.
Abstract: The chapter deals with some of the ethical issues that are raised by the routine of screening for intimate partner violence in health care. It is argued that if this routine is to be implemented, the staff needs to develop adequate ethical competence. The benefit of the screening may outweigh the risks, as it can result in early detection and help for those who have experienced violence in their intimate relationships and hence improve these patients’ quality of life. Screening might also reduce the number of mistreatments and new appointments and can thereby be cost effective for the health care system. Concerning the ethical issue of integrity it is argued that the screening must be done in a well-considered and thoughtful way. Also, the documentation needs to be plain and informative, in order to avoid stigmatizing those who have experienced intimate partner violence. Finally, it is argued that adequate ethical competence is needed if the discussed ethical requirements are to be fulfilled. The responsibility for such a competence development rests not only on the individual care provider, but also on the health care management.
Genusperspektiv på att rutinmässigt tillfråga kvinnor om våld i nära relationer (Gender perspectives on screening for intimate partner violence among women)
Höglund AT, in: Att fråga om våldsutsatthet som en del i anamnesen. Uppsala: NCK Rapport, 2011;4:105-111.
Does Informed Consent Have an Expiry Date? A Critical Reappraisal of Informed Consent as a Process
Helgesson G, Eriksson S, Cambridge Quarterly of Healthcare Ethics, 2011;20:85-92.
Abstract: Neither regarding voluntariness, nor information, is informed consent just a single event, but rather an ongoing process not ending until the study is over. Whether the original informed consent remains morally valid depends on whether the participant is still adequately informed and still consents. In the light of this it has been suggested that informed consent has an expiry date beyond which it is no longer valid unless renewed, both regarding information supplied and the very act of consenting. We argue that this idea is valid in some instances but also risk, for example. putting the competence of research subjects in question, introducing overly intrusive consent routines, and not allowing subjects to decide how much information to process and to remember. Thus it seems that underlying this approach to defend the autonomy of research subjects is actually a paternalistic attitude.
The need to down regulate. A minimal ethical framework for biobank research
Hansson MG, in: Dillner J. (ed.), Methods in Biobanking, Methods in Molecular Biology Book Series No 675, The Humana press, Springer 2011.
Abstract: There are currently multiple international bodies suggesting legal and ethical frameworks for regulating international biobank research. One will for obvious reasons find inconsistencies in terminology and differences in procedures suggested for biobank research among all those guidelines, emanating from many
different moral and legal traditions. A central question is whether this constitutes a threat to making progress in international biobank research, as some have argued. In this book, Chapter 1 suggests that there are sufficient and well-established instruments and ethical principles available to guide research in this area. Basically I argue that there is no need for a top-down superstructure of detailed rules and guidelines to be imposed on biobank researchers. With the existing ethical review boards (ERBs) playing a central role guided by well-established ethical guidelines (e.g., the Helsinki Declaration) and solutions to specific ethical problems suggested in the literature, self-regulation by researchers providing arguments for balancing of interests in association with different research initiatives and protocols will be sufficient. Traditional information and consent procedures suffice and data protection implies a sovereign right of the individual citizen to grant the use of biobank material and personal data that is needed for biobank research. Clearly, there may still be inconsistencies in terminology when researchers of different nationalities meet in common enterprises, but both they and the ERBs are well equipped to sort out what is actually meant and propose different instruments for, for example, coding following recently established nomenclatures. The existing ERBs should play the key role, guided by the sound argumentation of the researchers in their applications to the board.
Neuroética. Cuando la materia se despierta
Evers K, Katz editores, 2010.
Spanish abstract: ¿Por qué la evolución de las funciones cognitivas superiores produjo seres morales en lugar de seres amorales? ¿Qué significa para un animal "actuar como un agente moral"? ¿De dónde viene nuestra predisposición a producir juicios morales? Surgida del avance reciente de las neurociencias, la neuroética ha hecho suya la tarea de investigar las respuestas a preguntas de ese tipo. Porque el cerebro no es -como muestran las neurociencias- una especie de procesador que recibe datos del entorno y los elabora produciendo resultados de manera estrictamente determinista; es, antes bien, dinámico y variable, activo de manera consciente y no consciente, y su arquitectura está sujeta al impacto social, en especial debido al considerable peso de las improntas culturales almacenadas en él epigenéticamente. Esta nueva concepción del cerebro introduce modificaciones profundas en nociones fundamentales tales como las de conciencia, identidad, yo, integridad, responsabilidad personal y libertad. Interfaz entre las ciencias empíricas del cerebro, la filosofía del espíritu, la ética y las ciencias sociales, la neuroética se ocupa de los beneficios y los peligros potenciales de las investigaciones modernas sobre el cerebro y se interroga también acerca de la conciencia, el sentido de sí y los valores.
This book was published in Argentina in 2010 and will be published in Spain in February 2011. The book was originally published in French in 2009.
The moral primacy of the human being: A reply to Parker
Helgesson G, Eriksson S, Journal of Medical Ethics, 2011;37:56-57.
Abstract: In a previous paper in the Journal of Medical Ethics, the authors argued that the research ethical principle stating that the individual shall have priority over science, found in many guidelines, is utterly unclear and because of this should be explicated or otherwise deleted. In a recent commentary, Parker argued that this leaves us defending a position that would allow totalitarian regimes to pursue glory at the expense of its citizens. The present response addresses this and similar accusations.
Also read previous article by Helgesson G & Eriksson S, Against the principle that the individual shall have priority over science, Journal of Medical Ethics, 2008;34:54-56.
On the need for improved protections of incapacitated and non-benefiting research subjects
Eriksson S, Bioethics, Bioethics, Online pre-publication 25 Feb 2010 DOI: 10.1111/j.1467-8519.2010.01804.x
Abstract: In this article, it is claimed that the protective provisions for adults with impaired decision-making capacity are misguided, insofar as they do not conclusively state whether research on this group should be permitted only as an exception, and as they arbitrarily allow for some groups to benefit from such research while others will not. Moreover, the presumed or former will of the subject is given insufficient weight, and the minimal risk standard does not make sense in this context. Because of these problems, the present guidelines allow for the possibility of vulnerable people being exploited, something that is hidden behind a guise of solidarity. Instead we need to address the real issues at stake by rewriting the present statutes. It is suggested that new guidelines should be in some continuity with earlier efforts. However, in order to protect these subjects there is additional need for appointed representatives who monitor research and for legal obligations to compensate for any injuries suffered. Without these or similar measures we won't have an adequate system in place for the protection of non-benefiting persons who are unable to consent to research.
In search of the missing subject: narrative identity and posthumous wronging
Masterton M, Hansson MG & Höglund AT, Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, doi:10.1016/j.shpsc.2010.10.010, online pre-publication
Abstract: With the advanced methods of analysing old biological material, it is pressing to discuss what should be allowed to be done with human remains, particularly for well documented historical individuals. We argue that Queen Christina of Sweden, who challenged the traditional gender roles, has an interest in maintaining her privacy when there are continued attempts to reveal her ‘true’ gender. In the long-running philosophical debate on posthumous wronging, the fundamental question is: Who is wronged? Our aim is to find this ‘missing subject’ using narrative theory.
Narrative identity emphasises the fact that no person is alone in knowing or telling their life story. People’s lives are entangled and parts of the life story of a deceased person can remain in the living realm. Since the narrative identity of a person does not necessarily end upon their death, and this narrative continues to relate directly to the person who once existed, it is the narrative subject that can continue to be posthumously wronged. Queen Christina can no longer maintain her own identity, but we maintain it by our research into her life. We propose three duties relevant for posthumous wronging: the duty of truthfulness, the duty of recognition and the duty to respect privacy.
Knowledge of human papillomavirus among high school students can be increased by an educational intervention
Gottvall M, Tydén T, Höglund AT, Larsson M, International Journal of STD & AIDS 2010;21:558-562.
Summary: The aim of this study was to evaluate the effect of an educational intervention concerning human papillomavirus (HPV) directed at Swedish first year high school students. The intervention consisted of a class room lesson, a website and a folder. Outcome variables were knowledge of HPV and attitudes to preventive methods such as HPV vaccination, condom use and Pap smear testing. An intervention group (n ¼ 92) was matched with two comparison groups (n ¼ 184). At baseline, the median score for HPV knowledge was one out of 10 in both groups. At follow-up, the median knowledge score had increased to six in the intervention group, but was still one in the comparison group (P, 0.001). Attitudes to HPV vaccination, condom use and Pap smear testing remained the same (P . 0.05). In conclusion, a short school-based intervention can greatly increase the students’ knowledge about HPV, but attitudes and behaviours are less easy to influence.
Uma Nova Visão do Cérebro: o Aparecimento da Neuroética
Evers K, in Curado & Oliveira (eds.) 2010, Pessoas Transparentes: Questões Actuais de Bioética, EdicõesAlmedina, Coimbra, Portugal, 2010:77–92.
Varför filosoferar man?
Segerdahl P, Filosofisk tidskrift. 2011:1.
Paediatric health calls to Swedish telenurses: a descriptive study of content and outcome
Kaminsky E, Carlsson M, Höglund AT, and Holmström I, Journal of Telemedicine and Telecare 2010;16:454.
Abstract: We collected data about telephone triage calls concerning children in Sweden. A sample of 110 paediatric calls were recorded. The transcribed data were analysed regarding word count, reasons for calling, results of calls, ages and gender of children, and gender of parents. The median call length was 4.4 min and the median child's age was 3.5 years. Mothers made 73% of calls, but mothers and fathers called to the same extent about daughters and sons, and regardless of age. The most common reasons for calls were ear problems, rash/wound or fever. In nearly half the calls, the telenurses provided self-care advice. Call length, word count or caller's part of word count did not differ according to gender of parents or children. However, mothers were more likely to receive self-care advice while fathers were more often referred to other health services by the telenurses. Telenurses might need to improve their gender competence, and more male telenurses in the service would potentially be beneficial to callers.
Gender and Bioethics
Höglund AT, in: Never Mind the Gap! Gendering Science in Transgressive Encounters, Blomqvist M & Ehnsmyr, E (eds), Skrifter från Centrum för genusvetenskap / Crossroads of Knowledge 15, Universitetstryckeriet, Uppsala 2010
Abstract: The main task for bioethicists has always been to protect vulnerable patients and research subjects from harm and abuses. Likewise, the legal and moral rights of patients and research subjects have also been at the core of this tradition. In spite of this, neither gender, nor ethnicity or class, have been much observed within bioethics. In this article it is argued that the lack of gender perspectives in bioethics mainly depends on two main features of the bioethics tradition, namely, the dominance of principles and the influence of liberal individualism. Groups and their moral interests have not been much explored within traditional bioethics, and hence injustices based on identity constituting factors, such as gender, ethnicity, age, class, and sexuality have been unobserved. In the article, some examples of recent advances in bioethics with a gender perspective are given; for example, the critique of principle-based ethics and the development of the ethical principle of autonomy from a relational perspective. Finally, one example of bioethics with a gender perspective is presented, namely, a study on how gender, age and ethnicity can influence priority setting in health care. The conclusion is that a gender perspective impacts both topic and method as well as theoretical assumptions in bioethics.
Gene myths in public perceptions
Svalastog AL, Public Understanding of Science, Published online before print September 13, 2010, doi: 10.1177/0963662510376284
Abstract: In this article I examine myths in the gene science debate, and their use as a tool in analysis of popular perceptions and public opinion of genetic science and gene technology. In daily language myth means something untrue, though theories of myth present them as carriers of knowledge and truth. I understand myth as a narrative, a cultural construct that aims to describe the world, its origin, and its constituent elements. I compare scholars’ usage of myths, considering their implications. I conclude that i) As an analytical tool the concept of myth is too loosely defined, or understood through theories which leave out context, social relations and interaction. This provides limited insight about myths and myth-making in present day society. ii) An updated understanding of myths, including location/context and interaction/process would enrich analysis.
The role of guidelines in ethical competence-building: Perceptions among research nurses and physicians
Höglund AT, Eriksson S, Helgesson G, Clinical Ethics 2010;5:95-102.
Abstract: The aim of the present study was to describe and explore the perception of ethical guidelines and their role in ethical competence-building among Swedish physicians and research nurses. Twelve informants were interviewed in depth. The results demonstrated that the informants had a critical attitude towards ethical guidelines and claimed to make little use of them in practical moral judgements. Ethical competence was seen primarily as character-building, related to virtues such as being empathic, honest and loyal to patients. Ethical competence was assumed to be learned through good examples, role models and practical experience, while ethical guidelines were not perceived as valuable in this process. In order to improve the staff's familiarity with and the usability of ethical guidelines, the workplace needs to provide opportunities for ethical dialogues. In such discussions, argumentation can improve, virtues can be developed and guidelines can be usefully invoked.
Is patient involvement during hospitalization for acute myocardial infarction associated with post-discharge treatment outcome? An exploratory study
Arnetz JE, Winblad U, Höglund AT, Lindahl B, Spångberg K, Wallentin L et al., Health Expectations, 2010;13(3):298-311.
Abstract Objective: To investigate whether patient involvement during hospitalization for acute myocardial infarction (MI) was associated with health and behavioural outcomes 6–10 weeks after hospital discharge. Background: Patient involvement has been associated with improved health outcomes in chronic disease, but less research has focused on the effects of patient involvement in acute conditions, such as MI. Design: Self-administered questionnaire study. Questionnaire results were run against medical outcome data in a national database of cardiac patients. Setting and participants: Cardiac patients (n = 591) on their first follow-up visit after hospitalization for MI at 11 Swedish hospitals. Main outcome measures: Patient ratings of three questionnaire scales related to involvement; cardiovascular symptoms, medication compliance, participation in cardiac rehabilitation, and achievement of secondary preventive goals. Results: More positive patient ratings of involvement were significantly associated with fewer cardiovascular symptoms 6–10 weeks after hospital discharge. In contrast, patients who attended cardiac rehabilitation and achieved the goals for smoking cessation and systolic blood pressure were significantly less satisfied with their involvement. No association was found between involvement ratings and medication compliance. Conclusion: This study represents a first attempt to examine associations between patient involvement in the acute phase of illness and short-term health outcomes. Some significant associations between involvement and health and behavioural outcomes after acute MI were found. However, higher involvement ratings were not consistently associated with more desirable outcomes, and involvement during hospitalization was not associated with MI patient health and behaviour 6–10 weeks after hospital discharge to the extent hypothesized.
Hypothetical and factual willingness to participate in biobank research
Johnsson L, Helgesson G, Rafnar T, Halldorsdottir I, Chia KS, Eriksson S, and Hansson MG,European Journal of Human Genetics, 2010;18:1261-1264.
Abstract: In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.
Duties to Past Persons: Moral Standing and Posthumous Interests of Old Human Remains
Masterton M, doctoral thesis, Acta Universitatis Upsaliensis, 2010.
Abstract: Genetic research has increasing power to analyse old biological remains. Biological traces of well-known historical persons can reveal personal information. The aim of this thesis is to investigate ethical concerns for the dead, within the biological, historical and archaeological sciences.
In philosophy there is a long-running discussion on whether or not the dead can be wronged. The good name is proposed as a candidate of a posthumous interest. It is first of all argued that slandering per secan be wrong regardless of posthumous wronging of the dead. Secondly, the concept of change is investigated. It is argued that the property of having a reputation is a relational property. Hence a change in public opinion of a dead person, is also a change in the dead person’s reputation.
The third contribution of this thesis is a constructive proposal for how a posthumous identity could be understood using narrative theory. Understanding identity through the life-story opens up the possibility of a gradual loss of identity after death, rather than absolute loss at the moment of death. Fragments of a person‘s narrative identity can persist in other peoples’ narratives, and for some historical persons, their narratives can be found long after their death.
Finally, the implications of a remaining narrative identity for the dead are investigated in the area of archaeology and museumology. In the past 30 years, there has been increasing critique about present and past discriminatory handling of old human remains by archaeologists, in museums and in other institutions. Increasing numbers of requests have been made for repatriation or reburial of old human remains. Following an analysis of three current ethical guidelines in handling old human remains, changes to these guidelines are proposed based on a narrative method to a hypothetical claim of reburial.
Do we need a wider view of autonomy in epidemiological research?
Hansson MG, British Medical Journal 2010;340:c.(2335):1172-1174.
Abstract: Despite the fact that privacy and data protection legislation allows epidemiological and non-intervention research to be carried out without an informed consent there is evidence from several countries of ethical review boards and data controllers requiring an explicit and specific informed consent for studies of this kind. The recent guidelines for epidemiological studies from CIOMS also select specific and explicit consent as the default position. Illustrated by a case study it is here argued that these decisions by the review boards as well as the CIOMs guidelines and part of the scholarly work by ethicists and lawyers reflect a too restricted view of autonomy and that a more generous view is available that is less costly to patient needs of evidence based medical treatment.
Patient participation during hospitalization for myocardial infarction: perceptions among patients and personnel
Höglund AT, Winblad U, Arnetz B, Arnetz J, Scandinavian Journal of Caring Sciences. 2010;24(3):482-489.
Abstract: Background: Patient participation in healthcare decision-making and illness management has been associated with high patient satisfaction ratings and improved treatment outcomes in chronic diseases. Less is known about patient participation in acute illness, such as myocardial infarction (MI).
Aim: To explore and describe patient and personnel perceptions of patient participation in care processes and decision-making during hospitalization for MI.
Method: A descriptive qualitative design was used. Five thematic focus group interviews were carried out (n = 25), two with patients and three with personnel, at three Swedish hospitals in 2005. Two researchers were present during the interviews; one as facilitator and one responsible for documentation. The interviews were recorded, transcribed verbatim and analysed through a thematic stepwise method.
Results: Five themes emerged from the interviews: the meaning of patient participation, positive outcomes, difficult situations, hindrances and facilitating factors. A shared basic assumption in all groups was that patient participation is valuable and desirable in the patient–doctor/nurse encounter in MI care. However, both staff and patients viewed patient participation primarily as information. Active involvement in medical decision-making was less emphasized. Participation was judged as especially difficult to achieve during the initial, emergency phase of MI, although the informants also stressed the need for information in this phase. Positive outcomes of patient participation mentioned were that the patient may feel more secure if involved and that he/she might be more committed to the recovery process. Hindrances were lack of time, staff and, in patients, medical knowledge. Patient characteristics could also influence the level of participation.
Conclusion: If patient participation is to be achieved in all phases of MI care, patients need to be made aware of their right to participate. Health care professionals need to develop appropriate communication skills for each phase of the MI patient's hospitalization.
Ulysses contracts for the doctor and for the patient
Hansson MG & Hakama M, Contemporary Clinical Trials, 2010;31:202-206.
Abstract: Research subjects participating in randomised clinical trials have a right to drop out of a study without specifying any reason for this. However, leaving a trial may be contradictory to their own general interests in medical research since drop outs may lead to biased conclusions and loss of valuable medical information. We suggest in this paper that self-binding “Ulysses contracts” that are non-exploitative and based on autonomous decisions by research subjects as well as by investigating doctors should be implemented with stopping rules adjusted to the needs of different kinds of randomised clinical trials.
You can use my name: You don't have to steal my story - A critique of anonymity in indigenous studies
Svalastog AL, Eriksson S, Developing World Bioethics 2010;10(2):104-110.
Abstract: Our claim in this paper is that not being identified as the data source might cause harm to a person or group. Therefore, in some cases the default of anonymisation should be replaced by a careful deliberation, together with research subjects, of how to handle the issues of identification and confidentiality. Our prime example in this article is community participatory research and similar endeavours on indigenous groups. The theme, content and aim of the research, and the question of how to handle property rights and ownership of research results, as well as who should be in charge of the research process, including the process of creating anonymity, should all be answered, before anonymity is accepted.
Gender and the War on Terrorism. The Justification of War in a Post-9/11 Perspective
Höglund AT, Skrifter från Centrum för genusvetenskap/Crossroads of Knowledge 13, Uppsala universitet 2010. ISBN 978-91-978186-2-9
In the present book, the so-called “war on terrorism” (i.e., the wars in Afghanistan and Iraq that followed the 9/11 terror attacks) is analyzed from an ethical as well as a gender perspective. Through a detailed analysis of the arguments used to justify violence on both sides of the conflict, it is demonstrated how violent acts can become part of the construction of gender. Further it is argued that debates around the ethics of “just war” rely on particular ideas about valued masculinities and femininities, but at the same time they also serve to construct particular forms of gender. The present analysis reveals how scholars, politicians and commentators, with or without knowledge of and references to classical just war theorists, both relied upon and created ethical theories of the just war in their rhetoric on the war on terrorism. Furthermore, the book analyzes how the advocates of different positions in the debate justify their positions and how gender is constructed in and through these arguments. The conclusion of the investigation is that the rhetoric that has been used to justify, or in some cases to condemn, the war against terrorism both relies upon and sustains particular constructions of masculinities and femininities.
Order from publications@gender.uu.se
Taking the patient’s side: the ethics of pharmacogenetics
Hansson MG, Personalized Medicine, 2010;7(1):75-85.
Abstract: From the perspective of current and future patients, the development of the field of pharmacogenetics is of immense interest. The encouraging vision that is now being established is that we may move from trial and error therapies to evidence-based personalized medicine in clinical practice. However, research and the application of pharmacogenetics to clinical practice are believed to raise a host of controversial ethical issues. Some of these are related to the research process, for example, confidentiality and informed consent in association with human tissue sampling. Other issues arise on a societal level, for example, issues regarding justice and the use of race or ethnicity as proxies for genotyping. In this perspective, I comment on this debate and also suggest what we may learn from previous discussions regarding DNA testing and gene transfer methods. Arguably, the most important ethical perspective in medical research and drug development is related to the interests of patients wanting medical treatment that is both effective and carries low risks of adverse effects. Risk:benefit ratios must always be compared with existing alternatives, and while the risk of adverse effects may be tolerable for some individuals, owing to genetic reasons, this may not be relevant for others. This will have consequences for regulatory policies regarding drug development. In the future, personalized medicine will also need to take epigenetic and environmental factors into consideration.
Biosecurity
Kuhlau F and Hart J, in: Burgess,JP (ed.), The Routledge Handbook of New Security Studies, Routledge, 2010
Changing defaults in biobank research could save lives too
Forsberg JS, Eriksson S, Hansson MG, European Journal of Epidemiology, 2010;25(2):65-8.
Abstract: In an effort to increase the amount of organs available for transplantation, many countries have implemented presumed consent for organ donation. Presuming a wish to contribute to medical advances through biobank research on previously taken tissue samples could similarly improve health and wellbeing. In this article we analyze common arguments for and against presumed consent for organ donation and assess their relevance in the context of biobank research. In spite of obvious differences between biobank research and organ transplantation the cases for implementing presumption of a positive attitude appear quite analogous. It has repeatedly been shown that a majority of the general population supports these projects and selecting informed consent as the default position decreases the amount of organs and samples available and thus reduces the prospect of promoting health. We conclude that instead of presuming that individuals do not wish to contribute to the advancement of healthcare through biobank research on previously taken samples, ethics committees should presume that they do.
Ethical Dilemmas and Ethical Competence in the Daily Work of Research Nurses
Höglund AT, Helgesson G, Eriksson S, Health Care Analysis 2010;18:239-251.
Abstract: In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence.
2009
Biobanks: Questioning Distinctions
Hansson MG and Maschke KJ, Biobanks: Questioning Distinctions, Science, 2009;326(5954):797.
High HPV vaccine acceptance despite low awareness among Swedish upper secondary school students
Gottvall M, Larsson M, Hoglund AT, Tyden T, Eur J Contracept Reprod Health Care, 2009;14:399-405
Abstract: Objective: To investigate knowledge of human papillomavirus (HPV) and attitudes to HPV vaccination and condom use among Swedish first year upper secondary school students.
Methods: Classroom questionnaire filled in by 608 students from a strategic sample of seven upper secondary schools in Sweden. Results: Only 13.5% (n¼82) of the students had heard about HPV and 6% (n¼35) were aware of HPV vaccination. As many as 84% (n¼508) would like to be vaccinated against HPV. The high cost of vaccination was the greatest obstacle (total group 37%, n¼227); among girls the second major hindrance was the fear of needles (19%, n¼65). Before considering an HPV vaccination 73% (n¼443) wanted more information and 36% (n¼220) would like to receive such information from the school nurse. The students considered it less likely that they would use a condom when having intercourse with a new partner if they were vaccinated than if they were not (p50.001).
Conclusion: Despite intensive marketing directed at potential vaccine consumers, knowledge of HPV and of HPV vaccines was very low among first year upper secondary school students. Their attitude towards vaccination was positive but most of them wanted more information before considering vaccination.
Djuren i kulturen
Segerdahl P, Daidalos, Göteborg, 2009, ISBN: 978-91-7173-303-0
När man hänvisar till "naturligt beteende" som ledstjärna för god djurhållning likställs vanligtvis naturligt beteende med att djuren mår bra. Kan vi veta hur djur mår? Kan vi undvika att läsa in vår mänskliga psykologi i djurs beteende? Lämnar vi inte öppet för djurhållares individuella godtycke och därmed även för fabriksdjurhållning?
Argumentationsanalys. Färdigheter för kritiskt tänkande
Björnsson G, Kihlbom U, Ullholm A, Natur & Kultur, Stockholm, 2009, ISBN 978-91-27-11808-9
Changing perspectives in biobank research – from individual rights to concerns about public health regarding the return of results
Stjernschantz Forsberg J, Hansson MG, Eriksson S, European Journal of Human Genetics, 2009;17:1544-1549.
Abstract: During the last decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to
the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated material,
should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of
perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future disease. Research that bears the prospect of advancing medicine and that
can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.
Att analysera och teoretisera kön och religion. Förslag till nytt religionsbegrepp
Svalastog AL, Marburg Journal of Religion, 2009;14(1).
Abstract: While specialists in gender studies often refer to religion they seldom have recourse to carefully conceived definitions of it. The problem of definition is explored here in terms of its plurality of expressions and interpretation, internal tensions and change, and similarities and relations which cross traditions which are often perceived as being separate and distinct. Myth and ritual are taken to be of central importance, both being understood as gendered and bodily constituted. Theoretical inspiration is drawn from Wittgenstein's understanding of meaning as being constituted contextually and bodily and thus inseparable from social life. In this persepctive, religious language is a more or less precise act whose meaning will differ depending on the context, agents and agendas involved. Specific arguments relating to meaning and action are also drawn from the work of M. Douglas and L. Bäckman, both of whom have deconstructed and discussed (post-)colonial conceptualizations of culture. Their elaboration of potentiality and change has been of special interest. In sum, religion is regarded as (1)a dynamic and ambiguous field of meanings that is continuously created and constituted through human interaction (2) always gendered (3)bodily expressed and constituted (4) composed of myth, ritual and time concepts (5) a cource of continuity as well as of change in present social interaction (6) transmitted and renewed through mytho poets, and (7)subject to analysis in terms of power, with reference to social interaction, socioeconomic conditions and the wider context.
Ethical Issues in Cancer Register Follow-up of Hormone Treatment in Adolescence
Hultman CM, Lindgren AC, Hansson MG, Carlstedt-Duke J, Ritzen M, Persson I, Kieler H, Public Health Ethics 2009;2(1):30-36
Abstract: Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height. Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women. Major themes were a wish to be involved and a positive attitude to the proposed register research. The women did not express worry after reading the study protocol, but did convey considerable frustration that this research had not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participation rate and a concern over missing data. The selection of information and consent or the decision to go ahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted, but acknowledge the primary goal of answering important questions. Our study provides support for safeguarding privacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientific value by requesting for informed consent.
Knowledge of human papillomavirus and attitudes to vaccination among Swedish high school students
Höglund AT, Tydén T, Hannerfors AK, Larsson M, International Journal of STD & AIDS, 2009;20(2):102-7
Abstract: The aim of the study was to investigate knowledge of and attitudes to sexually transmitted infection (STI) and STI prevention with special focus on human papillomavirus (HPV) and the new vaccine against HPV, among 16-year-old high school students in a Swedish context. A study-specific questionnaire was distributed to 572 first year high school students from five different high schools in a medium-sized town in Sweden. The students lacked knowledge of HPV and its association with cervical cancer. Similarly, their knowledge of the new vaccine was limited. Their attitude to condom use when having sex with a new partner was positive, but decreased if oral contraceptives were used and if they were vaccinated against an STI. The main source of information was the school, followed by youth clinics and the media. The results highlight the clinical importance for school nurses and personnel at youth clinics to inform adolescents about HPV and its association with cancer.
Neuroéthique. Quand la matière s'éveille
Evers K, Éditions Odile Jacob, Paris, 2009
(Neuroethics. When matter awakens)
Ethical issues in telenursing
Höglund AT, Holmström I, International Hospital Equipment and Solutions, 2009:7(34):18-19.
Abstract: Telenursing in healthcare brings advantages for both patients and personnel: for example, the improvement of resource- and time allocation and access for patients. However, this technique might also entail ethical difficulties. In this article a range of ethical aspects that are particularly challenging in telenursing are discussed.
Det ansiktslösa mötets etik. Sjuksköterskors erfarenheter av etiska dilemman vid telefonrådgivning
Holmström I, Höglund AT, in Holmström, I. (ed.): Telefonrådgivning in hälso- och sjukvård. Lund: Studentlitteratur, pp. 91-105.
Ethics and Biobanks
Hansson MG, British Journal of Cancer British Journal of Cancer, 2009;100:8–12.
Abstract: Biobank research has been the focus of great interest of scholars and regulatory bodies who have addressed different ethical issues. On the basis of a review of the literature it may be concluded that, regarding some major themes in this discussion, a consensus seems to emerge on the international scene after the regular exchange of arguments in scientific journals. Broad or general consent is emerging as the generally preferred solution for biobank studies and straightforward instructions for coding will optimise privacy while facilitating research that may result in new methods for the prevention of disease and for medical treatment. The difficult question regarding the return of information to research subjects is the focus of the current research, but a helpful analysis of some of the issues at stake and concrete recommendations have recently been suggested.
2008
Taking Due Care: Moral obligations in dual use research
Kuhlau F, Eriksson S, Evers K, Höglund AT, Bioethics Vol 22, 9 2008, 477-487
Abstract: In the past decade, the perception of a bioterrorist threat has increased and created a demand on life scientists to consider the potential security implications of dual use research. This article examines a selection of proposed moral obligations for life scientists that have emerged to meet these concerns and the extent to which they can be considered reasonable. It also describes the underlying reasons for the concerns, how they are managed, and their implications for scientific values.
Five criteria for what constitutes preventable harm are suggested and a number of proposed obligations for life scientists are considered against these criteria, namely, the obligations to prevent bioterrorism; to engage in response activities; to consider negative implications of research; not to publish or share sensitive information; to oversee and limit access to dangerous material; and to report activities of concern.
Although bioterrorism might be perceived as an imminent threat, the analysis illustrates that this is beyond the responsibility of life scientists either to prevent or to respond to. Among the more reasonable obligations are duties to consider potential negative implications of one's research, protect access to sensitive material, technology and knowledge, and report activities of concern. Responsibility, therefore, includes obligations concerned with preventing foreseeable and highly probable harm. A central conclusion is that several of the proposed obligations are reasonable, although not unconditionally.
'It's easier to talk to a woman'. Aspects of gender in Swedish telenursing
Höglund AT, Holmström I, Journal of Clinical Nursing 17:2979-2986 (2008)
Abstract: BACKGROUND: Telenurses at call centres in Sweden offer triage recommendations and self-care advice to the general public over the telephone, on a wide range of health problems. The demands on telenurses are multifaceted and competence is needed in many fields such as nursing, pharmacology, psychology and communication. Previous studies have shown that telenurses encounter many ethical dilemmas and that some of these are to do with gender related issues. Most telenurses, as well as most callers, are women. It is, therefore, reasonable to believe that gender plays an important role in the work of telenurses.
METHODS: A purposive sample of 12 female telenurses in Sweden participated in in-depth interviews twice during 2004–2005. The transcribed interviews were analysed inductively with a stepwise thematic method. RESULTS: Five themes emerged from the interviews, namely: female subordination in the family, disrespect in dialogue with female nurses, distrust in fathers' competence, reluctant male callers and woman-to-woman connection.
CONCLUSIONS: Gender construction and cultural gender norms seem to be at work in the encounter between Swedish telenurses and callers. Questions of power relations, the picture of the mother/woman as the primary carer for small children and distrusting men in their parental role were particularly highlighted.
Opt-out from biobanks better respects patients’ autonomy
Johnsson L, Hansson MG, Eriksson S, Helgesson G, BMJ, 2008;337:a1580
Philosophical challenges for neuroethics
Evers K, European Neuropsychopharmacology, Journal of the European College of Neuropsychopharmacology, Volume 18 Supplement 4 (2008).
Paper from the 21st ENCP Congress
30 August - 3 September 2008
Development and evaluation of a questionnaire for measuring patient views of involvement in myocardial infarction care
Arnetz JE, Höglund AT, Arnetz BB, Winblad U, European Journal of Cardiovascular Nursing, 2008;7:229-238.
Abstract: BACKGROUND: Patients' involvement in their healthcare has been associated with improved treatment outcomes in chronic illness. Less is known about the affects of patient involvement on the outcomes of acute illness, such as myocardial infarction. A better understanding of patients' views and behaviour during hospitalization might improve clinical practice and enhance patient involvement.
AIM: The aim of this study was to develop and evaluate a questionnaire for measuring patients' perceptions of their involvement during hospitalization for myocardial infarction care.
METHODS: Focus groups with myocardial infarction patients provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among myocardial infarction patients at eleven Swedish hospitals.
RESULTS: The questionnaire demonstrated good validity and reliability, with six factors measuring patient views and behaviour regarding involvement.
CONCLUSION: The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of patients regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of patient-staff interaction that need improvement. Pinpointing such areas may lead to improved patient involvement, satisfaction with care, and treatment outcomes.
Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study
Johnsson L, Hansson MG, Eriksson S, Helgesson G, BMJ, 2008;337:224-26.
Abstract: OBJECTIVES: To estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent.
DESIGN: Cross sectional study of register data.
SETTING: Biobanks used in Swedish health care, 2005-6.
POPULATION: Data on refusal to consent were obtained for 1.4 million biobank samples per year from 20 of 21 counties.
MAIN OUTCOME MEASURES: Rates of preliminary refusal to consent, confirmed refusal, and withdrawal of consent. RESULTS:Patients refused consent to either storage or use of their samples in about 1 in 690 cases; about 1 in 1600 confirmed their decision by completing a dissent form. Rather than having the samples destroyed, about 1 in 6200 patients wanted to restrict their use. Of those who had previously consented, about 1 in 19 000 withdrew their consent.
CONCLUSIONS: Refusal to consent to biobank research in Sweden is rare, and the interests of individuals and research interests need not be at odds. The Swedish healthcare organisation is currently obliged to obtain either consent or refusal to each potential use of each sample taken, and lack of consent to research is used as the default position. A system of presumed consent with straightforward opt out would correspond with people’s attitudes, as expressed in their actions, towards biobank research.
Physicians’ and nurses’ perceptions of patient involvement in myocardial infarction care
Arnetz JE, Winblad U, Arnetz BB, Höglund AT, European Journal of Cardiovascular Nursing, 2008;7:113-120.
Abstract: BACKGROUND: Patients' involvement in their healthcare has been associated with better health outcomes. However, few studies have examined whether patient involvement affects the work of healthcare professionals. A better understanding of professionals' views and behaviour is necessary for improving clinical practice and optimizing patient involvement.
AIM: To measure perceptions and behaviour regarding patient involvement among physicians and nursing staff caring for patients with acute myocardial infarction.
METHODS: A questionnaire study conducted in 2005 among cardiology staff at twelve Swedish hospitals. The questionnaire included six scales measuring staff views and behaviour.
RESULTS: Physicians, registered nurses, and practical nurses did not differ significantly in their views of patient involvement, but did differ significantly in behaviour (p<.001). All three groups felt that an actively involved patient enriched their work, at the same time increasing their work load and taking time from other tasks. Physicians discussed daily activities and lifestyle changes with myocardial infarction patients before hospital discharge to a greater extent than nursing staff (p<.001).
CONCLUSION: Physicians and registered nurses viewed time constraints as a hinder for patient involvement, while practical nurses felt unsure in communicating with patients. Considering these organizational and professional issues may improve patient involvement and health outcomes in myocardial infarction care.
Parental authority, research interests and children’s right to decide in medical research – an uneasy tension?
Swartling U, Helgesson G, Hansson MG, Ludvigsson J, Clin Ethics, 2008;3(2):69-74.
Abstract: There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent.
In this questionnaire study of 2500 families in south-east Sweden (with and without research experience) we explored parents' views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information (93.3%; median age 7) and assuring the child's consent/assent to participation (74.3%; median age 12).
However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data.
Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research.
Autonomy and negatively informed consent
Kihlbom U, Journal of Medical Ethics, 2008;34;146-149.
Abstract: The requirement of informed consent (IC) to medical treatments is almost invariably justified with appeal to patient autonomy. Indeed, it is common to assume that there is a conceptual link between the principle of respect for autonomy and the requirement of IC, as in the influential work of Beauchamp and Childress. In this paper I will argue that the possible relation between the norm of respecting (or promoting) patient autonomy and IC is much weaker than conventionally conceived. One consequence of this is that it is possible to exercise your autonomy without having the amount of and the kind of information that are assumed in the standard requirement of IC to medical treatments. In particular, I will argue that with a plausible conception of patient autonomy, the respect for and the promotion of patient autonomy are in certain circumstances better protected by giving patients the right to give their negatively informed consent to medical treatments.
Staff views and behaviour regarding patient involvement in myocardial infarction care: Development and evaluation of a questionnaire
Arnetz JE, Höglund AT, Arnetz BB, Winblad Spångberg U, European Journal of Cardiovascular Nursing, 2008;7:27-35.
Abstract: BACKGROUND: Healthcare legislation in several nations now dictates the responsibility of health care professionals to involve patients in decisions concerning care and treatment. However, few studies have examined the impact of patient involvement on the work of health care professionals. A better understanding of staff views and behaviour might enhance patient involvement. AIM: The aim of this study was to develop and validate a questionnaire for measuring views and behaviour regarding patient involvement among physicians and nursing staff caring for patients with myocardial infarction. METHODS: Focus groups among cardiology staff provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among cardiology staff at twelve Swedish hospitals. RESULTS: The questionnaire demonstrated good validity and reliability, with two factors measuring staff views and four measuring behaviour. CONCLUSION: The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of physicians and nursing staff regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of staff-patient interaction that need improvement, as well as implications of patient involvement for the work of each professional group on cardiology wards.
The Private Sphere. An Emotional Territory and Its Agent
Hansson MG, Philosophical Studies in Contemporary Culture, Springer, Vol. 15, 2008, X, 182 p., ISBN: 978-1-4020-6651-1
The non-interference perspective is common when theorizing about the protection of the private life of individuals and their families. However, this accepted way of looking at things, leads our thoughts astray. It fails to do justice to the interests both in being left in peace but at the same time participating in a community together with other people. New methods of communications interception, video and even satellite surveillance allow insight and an entry into personal matters, but they can also be used to satisfy people's need for protection, safety and security in public places. A theory about the respect for the individual's right to a private sphere and its protection ought therefore to incorporate both these interests.
In The Private Sphere it is suggested that an emotional territory, which forms the individual's own sphere of action and experience, has developed in the course of evolution in pace with the individual's conditions of life, brought about by challenges in the natural and social environment. The starting point is the insight that the behaviour of human beings with respect to their privacy reflects in a fundamental way patterns of behaviour among social animals. The emotional territory allows a readiness to act along different lines and to maintain a multiplicity of different social relations.
Against the principle that the individual shall have priority over science
Helgesson G, Eriksson S, Journal of Medical Ethics 2008;34:54-56.
Abstract: This paper highlights a feature common to many ethical guidelines, namely, the idea that the interests of the individual shall always prevail over the interests of science and society. The paper presents how some major ethical guidelines treat the balancing of research interests against those of research subjects and spells out the difficulties in interpreting the principle of the primacy of the individual in a way that can be action-guiding. It suggests various alternative interpretations of the primacy of the individual and argues that they do not hold. Finally, the implications of this analysis for ethical guidelines are discussed.
Do Ethical Guidelines give Guidance? A Critical Examination of Eight Ethics Regulations
Eriksson S, Höglund AT, Helgesson G, Cambridge Quarterly of Healthcare Ethics, 2008;17:15-29.
Abstract: The number of legal and nonlegal ethical regulations in the biomedical field has increased tremendously, leaving present-day practitioners and researchers in a virtual crossfire of legislations and guidelines. The eight ethical guidelines examined in this paper are written with the explicit purpose to guide behavior. Data on their treatment of informed consent clearly shows that users looking for ethical guidance run into three serious problems: the interpretation problem, the multiplicity problem, and the legalization problem. This shows that regulations do not, by themselves, suffice in facilitating ethical behavior. We conclude that a new approach to ethical guidelines is needed.
2007 and older
Genus, etnicitet och rättigheter: Om skapandet av identitet i ett mångkulturellt samhälle
Höglund AT, in Franck, Olof (red.): Genusperspektiv i skolan – om kön, kärlek och makt. Lund: Studentlitteratur, 2007
Developing Ethical Competence in Health Care Organizations
Kälvemark Sporrong S , Arnetz B, Hansson MG, Westerholm P, Höglund AT, Nursing Ethics, 2007;14(6):825-837.
Ethical framework for previously collected biobank samples
Helgesson G, Dillner J, Carlson J, Bartram CR, Hansson MG, Nature Biotechnology, 2007;25(9):973-976.
For the Safety and Benefit of Current and Future Patients
Hansson MG, Pathobiology, 2007;74:198–205
Can the Dead be Brought into Disrepute?
Masterton M, Hansson MG, Höglund AT, Helgesson G, Theoretical Medicine and Bioethics, 2007;28:137-149.
Queen Christina's moral claim on the living: Justification of a tenacious moral intuition
Masterton M, Helgesson G, Höglund AT, Hansson MG, Medicine, Health Care and Philosophy, 2007;10:(3): 321-327
Toward a philosophy for neuroethics. An informed materialist view of the brain might help to develop theoretical frameworks for applied neuroethics.
Evers K, EMBO reports 2007;8:S1, S48– S51.
Limited Relevance of the Right Not to Know—Reflections on a Screening Study
Helgesson G, Eriksson S, Swartling U, Accountability in Research: Policies and Quality Assurance, 2007;14(3):197-209.
Ethics takes time, but not that long
Hansson MG, Kihlbom U, Tuvemo T, Olsen L, and Rodriguez A, Ethics Takes Time, but not that long, BMJ Medical Ethics, 2007;8:6. doi:10.1186/1472-6939-8-6.
Can natural behavior be cultivated? The farm as local human/animal culture
Segerdahl P, Journal of Agricultural and Environmental Ethics, 2007;20:167-193.
Perspectives on Memory Manipulation: Using Beta-Blockers to Cure Post-Traumatic Stress Disorder
Evers K, Cambridge Quarterly of Healthcare Ethics, 2007;16:138-146.
Isolated stem cells - patentable as culture artifacts?
Hansson MG, Helgesson G, Wessman R, Jaenisch R, Stem Cells, 2007;25:1507-1510
Ethical Competence and Moral Distress in the Health Care Sector. A Prospective Evaluation of Ethics Rounds
Kälvemark Sporrong S, Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 224. Uppsala: Acta Universitatis Upsaliensis. 2007.
Concern, pressure and lack of knowledge affect choice of not wanting to know high-risk status
Swartling U, Eriksson S, Ludvigsson J, Helgesson G, European Journal of Human Genetics, 2007;15:556-562.
Being, Doing, and Knowing: Developing Ethical Competence in Health Care
Eriksson S, Helgesson G, Höglund AT, Journal of Academic Ethics, 2007;5:207-216.
Should donors be allowed to give broad consent to future biobank research?
Hansson MG, Dillner J, Bartram CR, Carlsson J, Helgesson G, Lancet Oncology, 2006;7:266-69.
Provide expertise or facilitate ethical reflection? A comment on the debate between Cowley and Crosthwaite
Eriksson S, Helgesson G, and Segerdahl P, Medicine, Health Care and Philosophy, 2006;9:389-392.
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