| 1. |
- Johnsson, Linus, 1978-
(författare)
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Trust in Biobank Research : Meaning and Moral Significance
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- What role should trust have in biobank research? Is it a scarce resource to be cultivated, or does its moral significance lie elsewhere? How does it relate to the researcher’s individual responsibility?In this thesis I draw four general conclusions. First, trust is still very much present in at least some biobanking settings, notably in Sweden, but possibly also internationally. Second, a morally relevant conception of trust entails that to be trustworthy, researchers must consider the normative expectations that people have of them, and renegotiate expectations that are mistaken. Third, this conception differs from “public trust” assessed through surveys. The main use of the latter is to legitimate policy, not to identify moral duties. Fourth, in spite of ethics review, guidelines and informed consent procedures, ethical issues will always arise during the course of a research project. Researchers can therefore never avoid their individual moral responsibility. Ensuring that one is adequately trusted is one step towards conducting morally acceptable research.Study I indicates that few Swedes refuse storage of samples in healthcare-associated biobanks and their use in research. Study II suggests that people are somewhat more willing to donate samples than surveys indicate, especially when approached face-to-face by health care personnel. Relationships of trust might thus be important in people’s decision-making. Study III investigates trust as a moral concept. The trustee is often in a unique position to determine what the other’s trust amounts to. When it is mistaken, the trustee has an obligation to counteract it, compensate for it, or renegotiate the expectations that cannot be met. In Study IV, I critique the feasibility of guaranteeing the trustworthiness of the research apparatus through formal measures such as ethics review and guidelines. Not only are there limitations of such measures to consider. They also risk blinding researchers to ethical issues that are not covered by the rules, fostering moral complacency, and alienating researchers to ethics.
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| 2. |
- Grauman, Åsa, 1982-
(författare)
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The publics’ perspective on cardiovascular risk information : Implications for practice
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Lay people struggle to understand the implications of cardiovascular risk information. With new advanced testing techniques and the digitalization of personal health information, the communication of cardiovascular risk becomes a challenge. The overall aim of the thesis was to investigate the publics’ perspective of cardiovascular risk information through a multi-method approach, including how individuals perceive risk, factors affecting an underestimation of risk, how cardiovascular risk communication affects individuals’ psychosocial health, and their preferences for risk communication. In study I, research participants’ perceptions about risk information were explored in five focus group interviews. The participants’ (n=31) perceptions about cardiovascular risk were complex, where multifactorial aspects were disregarded. The communication of cardiovascular risk information did not meet the participants’ need for understanding, support, and guidance regarding what to do with this information. Study II was a before-after investigation regarding the impact of cardiovascular risk information on research participants’ health-related quality of life and mental distress. Increased worry and anxiety were observed in individuals referred to hospital because of coronary artery stenosis. Study III was a cross-sectional study, which found that individuals with a very good or excellent self-perceived general health and individuals without a family history of CVD were more likely to underestimate their cardiovascular risk compared to participants with poor or fairly good general health and without a family history. Study IV was a cross-sectional study, investigating the preferences of the Swedish population for communication of cardiovascular risk information from a health checkup using a Discrete Choice Experiment. Besides cost, consultation time was the most important aspect when communicating cardiovascular risk. The findings suggest that cardiovascular risk communication does not reach its fullest potential when it comes to recipients’ perspective of the benefits of CV risk communication. Improvements should aim at increasing the recipients’ personal control and health literacy and furthermore, acknowledge the fact that self-perceived risk is influenced by how a person feels in general and experiences of family history.
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| 3. |
- Masterton, Malin, 1979-
(författare)
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Duties to Past Persons : Moral Standing and Posthumous Interests of Old Human Remains
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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 se can 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.
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| 4. |
- Drevin, Jennifer
(författare)
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Measuring Pregnancy Planning and the Effect of Childhood Abuse on Reproductive Health
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The London Measure of Unplanned Pregnancy (LMUP) and the Swedish Pregnancy Planning Scale (SPPS) are two measurements of pregnancy planning. Adverse childhood experiences (ACEs) and childhood abuse are stressful events that have been suggested to have both short- and long-term effects.Study I investigated the psychometric properties of the LMUP and the SPPS and compared their assessments. Questionnaire data from 2,314 pregnant women showed medium-high construct validity and high test-retest reliability for both measurements. The convergent validity of LMUP was low. The assessments of the LMUP and the SPPS corresponded substantially.Study II explored how the SPPS was interpreted and what women considered when responding to it. Twenty-five pregnant women were interviewed. Women responding to the SPPS took into account their life situation, intentions, desires, timing, actions to prepare for, or avoid, pregnancy, having discussed becoming pregnant with their partner, and reactions after learning of the pregnancy.Study III analysed the association between ACEs and pregnancy-related pain. Pregnant women (n = 142) responded to questionnaires in early and late pregnancy, respectively, and reported their pain intensities and pain distributions. Greater exposure to ACEs was associated with higher pain distribution and women exposed to ACEs reported higher worst pain intensities compared to non-exposed.Study IV investigated effects of childhood emotional, physical and sexual abuse on pregnancy planning. The effect of a potential collider-stratification bias were also studied. Questionnaire data from 76,197 pregnant Norwegian women showed separate but no joint effects of the categories on having an unplanned pregnancy and a collider-stratification bias could not explain the effects.The LMUP and the SPPS measure somewhat different aspects of pregnancy planning and there is a substantial agreement between their assessments. Both the LMUP and the SPPS showed good validity and test-retest reliability. However, the LMUP would likely benefit from item reduction and the SPPS poorly captures any health-related changes made in and the preconception period.The results suggest that childhood abuse and ACEs have an effect on pregnancy planning and pregnancy-related pain. The findings suggest that preventing child abuse could have a positive effect on later reproductive health.
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| 5. |
- Atry, Ashkan
(författare)
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Transforming the Doping Culture : Whose responsibility, what responsibility?
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The doping culture represents an issue for sport and for society. Normative debates on doping have been mainly concerned with questions of the justifiability of doping. The practice of assigning responsibility for doping behaviour has chiefly been individual-based, focusing mainly on the individual athlete’s doping behaviour. The overarching aim of this thesis is to investigate the relevance and the importance of the ideas of responsibility in relation to ethical debates on doping. The more specific aim is to examine the possibility of broadening the scope of responsibility beyond the individual athlete, and to sketch a theoretical framework within which this expansion could be accommodated. In the first study, it is argued that bioethicists have a moral/professional responsibility to start out from a realistic and up-to-date view of genetics in ethical debates on gene doping, and that good bioethics requires good empirics. In study 2, the role played by affective processes in influencing athletes’ attitudes towards doping behaviour is investigated, both on an individual and on a collective level. It is concluded that an exclusive focus on individual-level rule violation and sanctions may entail overlooking the greater social picture and would prove to be ineffective in the long term. In study 3, the common doping-is-cheating arguments are examined and it is argued that they fail to capture vital features of people’s moral responses to doping behaviour. An alternative account of cheating in sport is presented in terms of failure to manifest good will and respect. It is concluded that putting cheating in the broader context of human interpersonal relationships makes evident the need to broaden the scope of moral responsibility and agency beyond the individual athlete. In study 4, the particular case of assigning responsibility for doping to sports physicians is used to examine the current individual-based approach to responsibility. This approach underestimates the scope of the responsibility by leaving out a range of other actors from the discourse of responsibility. The central conclusion of the thesis is that transforming the current doping culture requires broadening the scope of responsibility to include individuals and groups of individuals other than the athletes themselves.
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| 6. |
- Drevin, Jennifer, et al.
(författare)
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Patients' views on using human embryonic stem cells to treat Parkinson's disease : an interview study
- 2022
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Ingår i: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23
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Tidskriftsartikel (refereegranskat)abstract
- Background: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.Objective: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion.Methods: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities.Results: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.
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| 7. |
- Grauman, Åsa, 1982-, et al.
(författare)
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Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment
- 2022
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Ingår i: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The use of human embryonic stem cells (ES cells) for the development of medical therapies is surrounded with moral concerns. The aim of this study was to assess the public's attitudes toward the use of ES cells for treatment of Parkinson's disease (PD) and other diseases, what factors are most important to consider when using ES cells for drug development, and if there is an association between religious beliefs and attitudes toward using ES cells for medical treatment.Methods: A randomly selected sample of the Swedish public, aged 18-87-years-old, completed an online survey (n = 467). The survey assessed socio-demographics, religious views, perceived moral status of the embryo, and attitudes toward using ES cells for medical treatment of PD and other diseases. Adjusted odds ratios (ORs) and 95% confidence intervals (CI) for positive vs. negative attitude toward using ES cells for drug development were computed using logistic regression.Results: The respondents were positive about using ES for treatment; specifically, 70% totally agreed that it is acceptable to use ES cells for treatment of PD, while 40% totally agreed that it is acceptable to use ES cells for treatment but induced pluripotent cells is just as efficient. Religion being of little importance in one's life was associated with a positive attitude toward using ES cells for treatment of PD (adjusted OR 6.39, 95% CI 2.78-14.71). The importance of being able "to access new, effective treatments against diseases that do not have any treatment available " was ranked as the most important factor to consider when using ES cells for drug development.Conclusion: Most respondents are positive about using ES cells for drug development, and making effective treatments accessible to those who do not have any. However, these attitudes are influenced by the specific disorder that the drug development is intended for, as well as the religious views and perceived moral status of the early embryo.
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| 8. |
- Gustafsson Stolt, Ulrica, 1965-
(författare)
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Aspects in bioethics : Theory and practice in a preventive screening for type 1 diabetes
- 2003
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- From a clinical perspective, as well as societal and global, the present rapid increase in the number of people diagnosed with diabetes is a cause of great concern. Simultaneously, our understanding of the aetiology and pathogenesis of type 1 diabetes (IDDM) remain limited. As of now there are two main approaches to predict the risk of diabetes development: either before by assessing the genetic factors presumably involved, or after by a combination of immunological (IAA, la-2, GAD) and genetic typing. The problems are for example that only 10% of those that develop diabetes have a first-degree relative, and that only a proportion of those with a genetic susceptibility will eventually develop type 1 diabetes Theoretically, prevention of type 1 diabetes can be done at three different levels: primary, secondary and tertiary intervention. However, it is argued that more basic research is needed before effective and safe prevention of type 1 can be introduced. More effort is also needed to identify the environmental factors and potential triggers.Screening for pre-diabetes belong to one of the two type of genetic testing and screening who are generally considered being ethically controversial: predictive, pre-symptomatic testing of children for disorders that do not usually (or where there are uncertainty in progression rate) manifest until adult life, and for which an effective intervention measure is not available. There are risks for creation of distress and anxiety, risks for false-positive results, risks of bypassing informed consent and stigmatisation in case of potential positive results. Discussed are also issues concerning the upholding of individual autonomy, confidentiality and integrity. Simultaneously, it has been argued that the ethical discussion is based on empirical premises that are not sufficiently studied, and that we furthermore lack empirical data.Thematically this thesis belongs to the discipline of descriptive ethics. Our aim was to empirically explore and describe the attitudes and opinions of to, on the basis of the empirical results, point at and discuss issues of bioethical relevance. Our case was ABIS (All Babies In Southeast Sweden) an ongoing prospective longitudinal cohort study for the prediction and prevention of type 1 diabetes (n=17,005). The research design included both qualitative studies: interviews with participating and non-participating mothers, as well as health professionals involved, and a quantitative study: consisting of a designed questionnaire exploring bioethical issues.The interview data indicate a positive attitude both to the ABIS aims and methods and there were less concern over research material, screening results, prevention than often assumed. However, there were concern expressed of issues concerning confidentiality, integrity and restrictions. The reasons for declining participation varied: not wanting their child put through frequent blood testing, fear of "experimentation". The interviews with the staff involved gave important data regarding information procedures and research design, for example the importance of identifying and informing all actors in research involving humans. The questionnaire data support at large earlier empirical findings: a benevolent attitude, less concern over biological samples and written material. Similar concerns were raised of confidentiality and integrity: material used to initial purposes, protection of identity, renewed consent. The majority wanted to know about high-risk status, even though no available intervention. Our interest in information and informed consent was renewed since participants showed a lack of knowledge/understanding regarding basic aims and methods. The problem of informed consent was discussed in the last two papers: the first focusing on the problem of obtaining informed consent, while the second explored potential alternatives of action if we have reason to believe the participants lack a sufficient understanding.
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| 9. |
- Matar, Amal
(författare)
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Considering a Baby? Responsible Screening for the Future : Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Preconception expanded carrier screening is a novel technology that involves the offer of a screening test for many recessive diseases (via an expanded screening panel) to prospective parents, with no priori risk. Test positive couples have a number of reproductive choices; prenatal diagnosis and aborting affected fetus, IVF and preimplantation genetic diagnosis, sperm or ovum donation or simply accept the risk. The test had been piloted in studies and can potentially be implemented in Europe. Therefore, it seemed pertinent to evaluate stakeholders’ perspectives on ethical and social implications of implementing and using preconception ECS in Sweden.Two main stakeholders were examined; healthcare professionals and health policymaking experts, via a mix of qualitative methods for data collection and data analysis. In Study I, we employed in-depth interviews to collect data and content analysis to analyze it. In Studies III and IV, expert interviews were used to gather data while thematic analysis was utilized to interpret it. Furthermore, in Study II, an ethical concept namely; reproductive autonomy, was critically discussed within a setting that expects a couple to make a conjoint reproductive decision about preconception ECS, while each partner still upholds his or her individual autonomy.The main findings of the empirical studies (Studies I, III and IV) echo to a great extent the prevailing ethical and social debates associated with the novel technology. Respondents expressed concerns with reproductive autonomy, medicalization, prioritization of health resources, discrimination and long term societal changes. Furthermore, respondents emphasized the importance to observe Swedish values, such as human dignity, equality and solidarity, when assessing a preconception ECS program. In addition, they described practicalities of implementation and political considerations that are pertinent to the Swedish context. Finally, some respondents recognized the advantages of reduced suffering and decrease in fetal anomalies and abortion as a consequence of preconception ECS.Study II, proposed a notion of couple autonomy, where certain demands if met, a couple’s reproductive decision can be accepted by healthcare staff as autonomous.The findings, in this thesis, steer towards non implementation of preconception ECS in its current status within the publicly-funded healthcare system in Sweden. This is because healthcare providers and experts were of the opinion that it would not solve a medical need, threaten Swedish values and use up resources extensively.
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| 10. |
- Schölin Bywall, Karin
(författare)
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Getting a Say : Bringing patients’ views on benefit-risk into medical approvals
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The focus of this thesis is a new quantitative approach to consider patient preferences on benefits and risks in medical approvals. The overall aim of this thesis was to explore how patient preference information may be relevant to regulatory marketing authorisation decisions.Study I provides an overview of the different decision-processes of industry, regulatory agencies and health technology assessment bodies/reimbursement agencies along the medical product lifecycle. In total, 15 decision points with the potential to include patient preference information were identified. Study II was an exploration of the patient perspective regarding the use of patient preference information in regulatory marketing authorisation decisions. Patients emphasised the need to have a say in decisions affecting their health and to be properly informed about potential risks and benefits of medical products. Study III assessed patient preferences on benefits and risks of Rheumatoid Arthritis treatments. Results revealed that patients’ preferences differed substantially. The three most important treatment attributes for patients with rheumatoid arthritis were: the probability of severe side effects, treatment effectiveness and route of administration. Those placing relatively more importance on treatment effectiveness were willing to acceptance higher risk levels of side effects. Study IV aimed to determine the influence of an educational tool, compared with traditional written information on patient preferences. It was found that those respondents receiving the educational tool focused more on the potential side effects than those receiving written information. Patient preference information has the potential to reveal patients’ preferences on benefits and risks with scientific rigour and can therefore be weighed against clinical data. This thesis supports the development of a structured approach to learn about patient preferences on benefits and risks in medical approvals
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