Biomedical subjects

Mats G Hansson

Publications and source records attributed to Mats G Hansson.

10 recordsLinked to original sources

PubMed2006

Combining efficiency and concerns about integrity when using human biobanks.

In the debate about human bio-sampling the interests of patients and other sample donors are believed to stand against the interests of scientists and of their freedom of research. Scientists want efficient access to and use of human biological samples. Patients and other donors of blood or tissue materials want protection of their integrity. This dichotomy is reflected in the Swedish law on biobanks, which came into effect 1 January 2003. In this article I argue that if the basic interest of scientists using human biological samples is in increasing knowledge and developing better treatments, and if the concept 'integrity' is properly understood, then sample donors should also be interested in promotion of efficiency as well as in the protection of their integrity. The basic premise of this argument is that donors of samples have interests related to the donation and use of samples as well as to the use of the results of the research, that is, new medical products and treatments. They have a role both as donors or participants in research and as end users of the research. I conclude that if (i) access to information acquired through biobank research is strictly limited to researchers, (ii) the information is protected by secrecy safeguards through coding and (iii) the procedures governing the research are open to public and democratic control, then most research using human biobanks may be carried out on the basis of making general information available when collecting biological samples, without further contact with participants.

Access to Information↗

PubMed2006

Should donors be allowed to give broad consent to future biobank research?

Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder progress. Therefore, establishment of common ground for ethical review of biobank research is essential. In this essay, broad consent is defined on a scale between strictly specified (eg, for a specific study) and blanket consent (ie, with no restrictions regarding the purpose of the research). Future research includes that which might not be planned or even conceptualised when consent is obtained. In conclusion, broad consent and consent for future research are valid ethically and should be recommended for biobank research provided that: personal information related to research is handled safely; donors of biological samples are granted the right to withdraw consent; and new research studies or changes to the legal or ethical authority of a biobank are approved by an ethics-review board.

Confidentiality↗

PubMed2006

Parents' perspectives on research involving children.

Children's participation in research is essential for the development of safe and age-appropriate treatments. However, children's participation is limited. The aim of this study was to determine (1) mothers' and fathers' views on which agencies/persons should evaluate the level of acceptable risk for children and (2) parents' willingness to allow children to participate in research. Medical factors, sociodemographics, and research attitudes were related to willingness. The study used a cross-sectional and longitudinal design with 863 expectant parents (435 women; 428 men) consecutively recruited at gestational week 19 during routine ultrasound examination at 2 hospitals in Uppsala County, Sweden. 123 women at gestational week 34 were followed-up. Parental ratings of agencies/persons' degree of involvement in risk-evaluation for. child research participants and parents' willingness to allow children to participate in research were the main outcome measures. Most parents believed that more pediatric research was needed. Attitudes played a major role in willingness, indicating a potential for information that could modify willingness. Over 80% of mothers and fathers rated the attending physician as needing to be "fully involved" in risk evaluation for research participants. Parents' views contradict current trends in research ethics which place evaluation of risk in the hands of regional agencies. Instead, the majority of parents would like the decision to be individually based on the attending physicians advise. We conclude that children's participation in research could be improved by actively incorporating the attending physician and by educating the public so that research attitudes can be based on accurate information.

Adolescent↗

PubMed2005

Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?

BACKGROUND: The aim of this study was to identify perceptions of the general public regarding research involving human tissues; to assess the public's willingness to donate samples to biobanks; and to identify factors associated with the willingness to donate samples. METHODS: Cross-sectional survey. Postal questionnaires to a random sample of the general public in Sweden, 18-80 years of age (n = 6000) in October 2002 (response rate 49.4%; n = 2928). RESULTS: A majority of the respondents had a positive attitude towards genetic research. Their trust in authorities' capability to evaluate the risks and benefits of genetic research varied. Individual university/hospital-based researchers received the greatest trust, while the county councils (health care providers), and the Swedish Parliament received the lowest trust. Most respondents (86.0%) would donate a linked blood sample for research purposes. Another 3.0% would provide an anonymous sample. In total, 78% of the respondents would agree to both donation and storage. The most common motive was benefit of future patients. The majority was indifferent to the funding source for the research and would delegate this judgment to the research ethics committee. After adjusting for covariates, those more likely to donate a sample were middle-aged, had children, had personal experience of genetic disease, were blood donors, had a positive attitude toward genetic research, and had trust in experts/institutions. CONCLUSIONS: The majority of the general public is willing to donate a sample to a biobank. The willingness is mainly driven by altruism, and depends on the public being well-informed and having trust in experts and institutions.

Adolescent↗

PubMed2005

"We are white coats whirling round"--moral distress in Swedish pharmacies.

OBJECTIVE: The extended role of pharmacists has made pharmacy practice more complex and increased the moral responsibility of pharmacy staff. Consequently, ethics has become an important part of their daily work. In health care, ethical dilemmas have been shown to cause distress, usually referred to as "moral distress". Moral distress among hospital personnel has been well described and discussed in numerous studies. There are very few similar studies in pharmacy settings. This article reports on the results of an investigation concerning whether and in what situations moral distress is present in pharmacy practice. METHOD: A questionnaire derived from focus group data, covering ethically troubling situations in pharmacy settings, was distributed to all staff of three pharmacies in Sweden. RESULTS: The results show that moral distress is experienced in the day-to-day pharmacy practice, and that it is in many ways connected to care providing. For example, prioritizing between customers was reported as very stressful. Younger personnel reported higher moral distress than their older colleagues did. However, there were no differences between pharmacies. A lack of support structures, such as meetings where ethical issues can be discussed, was reported by all the participating pharmacies. CONCLUSION: It is reasonable to assume that moral distress is even more present in pharmacy practice than in other health care areas as it is, in general, much more sensitive and exposed to the modern, demanding customer. The meeting with the customer is on a more neutral ground than in, for example, a hospital setting. Although there are ethical codes for pharmacists, they are not enough. Moral distress is experienced anyway; general codes and personal coping strategies must be supplemented with support from the management and work organization. There is a need to look more closely at specific factors related to the degree and extension of moral distress, going beyond individual coping strategies.

Attitude of Health Personnel↗

PubMed2005

International perspectives on engaging the public in neuroethics.

With an ever-increasing understanding of the brain mechanisms associated with core human attributes and values, there is an increasing public interest in the results of neuroscience research and the ways in which that new knowledge will be used. Here, we present perspectives on engaging the public on these issues on an international scale, the role of the media, and prospects for the new field of neuroethics as both a focus and a driver of these efforts.

Bioethical Issues↗

PubMed2004

Living with conflicts-ethical dilemmas and moral distress in the health care system.

During the last decade, the Swedish health care system has undergone fundamental changes. The changes have made health care more complex and ethics has increasingly become a required component of clinical practice. Considering this, it is not surprising that many health care professionals suffer from stress-related disorders. Stress due to ethical dilemmas is usually referred to as "moral distress". The present article derives from Andrew Jameton's development of the concept of moral distress and presents the results of a study that, using focus group method, identifies situations of ethical dilemmas and moral distress among health care providers of different categories. The study includes both hospital clinics and pharmacies. The results show that all categories of staff interviewed express experiences of moral distress; prior research has mostly focused on moral distress experienced by nurses. Second, it was made clear that moral distress does not occur only as a consequence of institutional constraints preventing the health care giver from acting on his/her moral considerations, which is the traditional definition of moral distress. There are situations when the staff members do follow their moral decisions, but in doing so they clash with, e.g. legal regulations. In these cases too, moral distress occurs. Hitherto research on moral distress has focused on the individual health care provider and her subjective moral convictions. Our results show that the study of moral distress must focus more on the context of the ethical dilemmas. Finally, the conclusion of the study is that the work organization must provide better support resources and structures to decrease moral distress. The results point to the need for further education in ethics and a forum for discussing ethically troubling situations experienced in the daily care practice for both hospital and pharmacy staff.

Conflict, Psychological↗

PubMed2003

Genetic counselling for cancer and risk perception.

The main aim was to investigate risk perception and psychological distress in individuals attending genetic counselling. A consecutive series of 86 individuals with a diagnosis and/or family history of breast, ovarian or colorectal cancer was included. Risk assessments were performed before and immediately after genetic counselling and at a one-year follow-up. Psychological distress was assessed 1 week before, and 6 weeks, 6 months and 1 year after genetic counselling. The number of individuals who correctly-estimated the general risk in the population increased significantly from 35%, before to 82% after counselling (p < 0.001). One year later, data on general risk estimates showed a significant reduction of the number of correct estimations to 51%, compared with directly after the counselling (p < 0.005). In total, 54% estimated their own lifetime risk correctly after the counselling, compared with 17% before (p < 0.001) (those with a cancer diagnosis estimated the risk of their children developing cancer). One year later, the number of correct estimations had dropped to 28%. Before the counselling, the majority of the participants overestimated both the general risk and their own/children's risk. The participants experienced moderate levels of psychological distress before the counselling and a decrease of anxiety afterwards (p < 0.02). However, half of the participants reported moderate or high distress. There were no differences in psychological distress between those who estimated their risk/ children's risk as low, moderate or high or between those who over-, under- or correctly estimated their own/children's risk. Further investigations are needed to develop and adjust the risk information provided to the individual in order to avoid misunderstanding, especially as this information is going to be revealed to family members Counselling support should be offered to those individuals who experience psychological distress.

Anxiety↗

PubMed2002

Imaginative ethics--bringing ethical praxis into sharper relief.

The empirical basis for this article is three years of experience with ethical rounds at Uppsala University Hospital. Three standard approaches of ethical reasoning are examined as potential explanations of what actually occurs during the ethical rounds. For reasons given, these are not found to be satisfying explanations. An approach called "imaginative ethics", is suggested as a more satisfactory account of this kind of ethical reasoning. The participants in the ethical rounds seem to draw on a kind of moral competence based on personal life experience and professional competence and experience. By listening to other perspectives and other experiences related to one particular patient story, the participants imagine alternative horizons of moral experience and explore a multitude of values related to clinical practice that might be at stake. In his systematic treatment of aesthetics in the Critique of Judgement, Kant made use of an operation of thought that, if applied to ethics, will enable us to be more sensitive to the particulars of each moral situation. Based on this reading of Kant, an account of imaginative ethics is developed in order to bring the ethical praxis of doctors and nurses into sharper relief. The Hebraic and the Hellenic traditions of imagination are used in order to illuminate some of the experiences of ethical rounds. In conclusion, it is argued that imaginative ethics and principle-based ethics should be seen as complementary in order to endow a moral discourse with ethical authority. Kantian ethics will do the job if it is remembered that Kant suggested only a modest, negative role of principle-based deliberation.

Ethical Analysis↗

PubMed2002

Focus on the individual--quality of life assessments in oncology.

In this review we investigate how assessments of quality of life (QoL) can be used in daily clinical practice. The focus is on individualized QoL assessments, but computerized-adaptive testing and interpretation of QoL scores are also considered. Quality of life (QoL) measurements have been used relatively infrequently in clinical practice, although individualized care planning and follow-up based on QoL information may lead to better outcomes of treatment and informed and autonomous decision-making by patients. A recent approach in assessing QoL is by individualized measures, which tap QoL as defined by the individual patient. Individualized QoL instruments, such as the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the Patient-Generated Index (PGI), have obvious appeal for use in clinical practice, since they incorporate topics of greatest concern to the individual patient, while also capturing their ratings and weightings. However, before general use in daily clinical practice can be recommended, some aspects of these instruments require further research, particularly issues concerning reliability, feasibility, interpretation and effectiveness.

Health Status↗