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  • 1.
    Abdulcadir, Jasmine
    et al.
    Univ Geneva, Univ Hosp Geneva, Ob Gyn Emergency Unit, Geneva, Switzerland; Univ Geneva, Univ Hosp Geneva, FGM C Outpatient Clin, Geneva, Switzerland.
    Merli, Claudia
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Department of Cultural Anthropology and Ethnology.
    Warren, Nicole
    Johns Hopkins Univ, Sch Nursing, Baltimore, MD USA.
    Medically Unnecessary Genital Cutting and the Rights of the Child: Moving Toward Consensus2019In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 19, no 10, p. 17-28Article in journal (Other academic)
  • 2.
    Ahlberg, Beth Maina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, International Maternal and Child Health (IMCH).
    Njoroge, Kezia Muthoni
    School of Health, Community of Education Studies, Northumbria University, Newcastle upon Tyne, UK.
    'Not men enough to rule!': politicization of ethnicities and forcible circumcision of Luo men during the postelection violence in Kenya2013In: Ethnicity and Health, ISSN 1355-7858, E-ISSN 1465-3419, Vol. 18, no 5, p. 454-468Article in journal (Refereed)
    Abstract [en]

    Background

    As a contribution to ongoing research addressing sexual violence in war and conflict situations in the Democratic Republic of Congo, Kenya and Rwanda, this paper argues that the way sexual violence intersects with other markers of identity, including ethnicity and class, is not clearly articulated. Male circumcision has been popularized, as a public health strategy for prevention of HIV transmission, although evidence of its efficacy is disputable and insufficient attention has been given to the social and cultural implications of male circumcision.

    Methods

    This paper draws from media reporting and the material supporting the prosecutor at the International Criminal Court case against four Kenyans accused of crimes against humanity, to explore the postelection violence, especially forcible male circumcision.

    Results

    During the postelection violence in Kenya, women were, as in other conflict situations, raped. In addition, men largely from the Luo ethnic group were forcibly circumcised. Male circumcision among the Gikuyu people is a rite of passage, but when forced upon the Luo men, it was also associated with cases of castration and other forms of genital mutilation. The aim appears to have been to humiliate and terrorize not just the individual men, but their entire communities. The paper examines male circumcision and questions why a ritual that has marked a life-course transition for inculcating ethical analysis of the self and others, became a tool of violence against men from an ethnic group where male circumcision is not a cultural practice.

    Conclusion

    The paper then reviews the persistence and change in the ritual and more specifically, how male circumcision has become, not just a sexual health risk, but, contrary to the emerging health discourse and more significantly, a politicized ethnic tool and a status symbol among the Gikuyu elite. In the view of the way male circumcision was perpetrated in Kenya, we argue it should be considered as sexual violence, with far-reaching consequences for men's physical and mental health.

  • 3.
    Allyse, Megan A.
    et al.
    Mayo Clin, Rochester, MN USA..
    Meagher, Karen M.
    Mayo Clin, Rochester, MN USA..
    Michie, Marsha
    Case Western Reserve Univ, Cleveland, OH 44106 USA..
    Isasi, Rosario
    Univ Miamis, Coral Gables, FL USA..
    Ormond, Kelly E.
    Swiss Fed Inst Technol, Zurich, Switzerland.;Stanford Univ, Sch Med, Stanford, CA 94305 USA..
    Bonhomme, Natasha
    Genet Alliance, Darlinghurst, NSW, Australia..
    Bombard, Yvonne
    Univ Toronto, Toronto, ON, Canada..
    Howard, Heidi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Musunuru, Kiran
    Univ Penn, Perelman Sch Med, Philadelphia, PA 19104 USA..
    Riggan, Kirsten A.
    Mayo Clin, Rochester, MN USA..
    Rubeck, Sabina
    Case Western Reserve Univ, Cleveland, OH 44106 USA..
    Translational Justice in Human Gene Editing: Bringing End User Engagement and Policy Together2023In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 23, no 7, p. 55-58Article in journal (Other academic)
  • 4.
    Ancillotti, Mirko
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour2021Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The rapid development of antibiotic resistance is directly related to how antibiotics are used in society. The international effort to decrease and optimise the use of antibiotics should be sustained by the development of policies that are sensitive to social and cultural contexts.

    The overarching aim of the thesis was to explore and discuss the Swedish public’s beliefs, values and preferences influencing engagement in judicious antibiotic behaviour.

    Study I explored through focus group discussions lay people’s perceptions and beliefs about antibiotics and antibiotic resistance. The Health Belief Model was used to identify factors that could promote or hinder engagement in judicious antibiotic behaviour. Participants found antibiotic resistance to be a serious problem but were not equally worried about being affected by it. There was a tension between individual and collective reasons for engaging in judicious behaviour.

    Study II explored lay people’s views on the moral challenges posed by antibiotic resistance through focus group discussions. Participants identified in the decreasing availability of effective antibiotics a problem of justice, which involves individual as well as collective moral responsibility. Different levels of policy demandingness were discussed in light of these results.

    Study III investigated, through an online Discrete Choice Experiment, public preferences regarding antibiotic treatment and the relative weight of antibiotic resistance in decision-making. Public behaviour may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication may affect personal decision-making.

    Study IV clarified the notions of collective and individual moral responsibility for antibiotic resistance and suggested a virtue-based account thereof. While everyone is morally responsible for minimising his/her own contribution to antibiotic resistance, individuals do or do not engage in judicious antibiotic behaviour with different degrees of voluntariness.

    The findings suggest that people could change their behaviour due to concerns over their own contribution to antibiotic resistance. Effective health communication should be developed from an appraisal of people’s attitudes, beliefs and social norms that influence antibiotic resistance related behaviours. Policy demandingness should take into account socioeconomic factors characterising local realities. 

    List of papers
    1. Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions
    Open this publication in new window or tab >>Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions
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    2018 (English)In: BMC Public Health, E-ISSN 1471-2458, Vol. 18, no 1, article id 1153Article in journal (Refereed) Published
    Abstract [en]

    Background

    High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption.

    Methods

    Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20–81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework.

    Results

    Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians.

    Conclusions

    Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

    Place, publisher, year, edition, pages
    BioMed Central, 2018
    Keywords
    Antibiotic resistance, health belief model, health behavior, qualitative research, Sweden
    National Category
    Public Health, Global Health, Social Medicine and Epidemiology
    Identifiers
    urn:nbn:se:uu:diva-362360 (URN)10.1186/s12889-018-6047-8 (DOI)000446405800003 ()30285689 (PubMedID)
    Available from: 2018-10-03 Created: 2018-10-03 Last updated: 2023-08-28Bibliographically approved
    2. An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance
    Open this publication in new window or tab >>An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance
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    2021 (English)In: Public Health Ethics, ISSN 1754-9973, E-ISSN 1754-9981, Vol. 14, no 1, p. 1-11, article id phaa033Article in journal (Refereed) Published
    Abstract [en]

    Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views.

    Place, publisher, year, edition, pages
    Oxford University PressOxford University Press (OUP), 2021
    Keywords
    Antibiotic resistance, responsibility, demandingness, justice
    National Category
    Ethics Medical Ethics
    Research subject
    Bioethics
    Identifiers
    urn:nbn:se:uu:diva-428884 (URN)10.1093/phe/phaa033 (DOI)000674745300001 ()34234840 (PubMedID)
    Available from: 2020-12-17 Created: 2020-12-17 Last updated: 2024-01-15Bibliographically approved
    3. Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment
    Open this publication in new window or tab >>Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment
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    2020 (English)In: International Journal of Antimicrobial Agents, ISSN 0924-8579, E-ISSN 1872-7913, Vol. 56, no 6, article id 106198Article in journal (Refereed) Published
    Abstract [en]

    Objectives: To identify preferences of the Swedish public regarding antibiotic treatment characteristics and the relative weight of antibiotic resistance in their treatment choices.

    Methods: A questionnaire including a discrete choice experiment questionnaire was answered by 378 Swedish participants. Preferences of the general public regarding five treatment characteristics (attributes) were measured: contribution to antibiotic resistance, cost, side effects, failure rate and treatment duration. Latent class analysis models were used to determine attribute-level estimates and heterogeneity in preferences. Relative importance of the attributes and willingness to pay for antibiotics with a lower contribution to antibiotic resistance were calculated from the estimates.

    Results: All attributes influenced participants’ preferences for antibiotic treatment. For the majority of participants, contribution to antibiotic resistance was the most important attribute. Younger respondents found contribution to antibiotic resistance more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and higher financial vulnerability were influenced more by the cost of the antibiotic treatment. Older respondents with lower financial vulnerability and health literacy, and higher numeracy found side effects to be most important.

    Conclusions: All attributes can be considered as potential drivers of antibiotic use by lay people. Findings also suggest that the behaviour of lay people may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication has the potential to affect personal decision making.

    Keywords
    Antibiotic resistance, Discrete choice experiment, Preferences, Communication, Behaviour, Sweden
    National Category
    Public Health, Global Health, Social Medicine and Epidemiology
    Research subject
    Health Care Research; Social Pharmacy; Social Medicine
    Identifiers
    urn:nbn:se:uu:diva-425711 (URN)10.1016/j.ijantimicag.2020.106198 (DOI)000596387600014 ()33080314 (PubMedID)
    Available from: 2020-11-18 Created: 2020-11-18 Last updated: 2021-01-27Bibliographically approved
    4. Individual moral responsibility for antibiotic resistance
    Open this publication in new window or tab >>Individual moral responsibility for antibiotic resistance
    2022 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 36, no 1, p. 3-9Article in journal (Refereed) Published
    Abstract [en]

    Antibiotic resistance (AR) is a major threat to public health and healthcare worldwide. In this article, we analyse and discuss the claim that taking actions to minimize AR is everyone's responsibility, focusing on individual moral responsibility. This should not be merely interpreted as a function of knowledge of AR and the proper use of antibiotics. Instead, we suggest a circumstantial account of individual responsibility for AR, where individuals do or do not engage in judicious antibiotic behaviour with different degrees of voluntariness. Furthermore, we suggest a notion of responsibility as a virtue, in which individuals have the opportunity to develop a sensitivity towards the AR theme and, consequently, are capable of engaging, actively and voluntarily, in judicious antibiotic behaviour. The development of such sensitivity depends on the creation of adequate circumstances, that is individual capacities and availability of resources.

    Place, publisher, year, edition, pages
    John Wiley & Sons, 2022
    Keywords
    Antibiotic resistance, individual responsibility, moral responsibility, virtue ethics, responsibility as virtue
    National Category
    Ethics
    Research subject
    Bioethics
    Identifiers
    urn:nbn:se:uu:diva-432509 (URN)10.1111/bioe.12958 (DOI)000702758800001 ()
    Available from: 2021-01-20 Created: 2021-01-20 Last updated: 2023-01-11Bibliographically approved
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  • 5.
    Ancillotti, Mirko
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal Bräcke University College.
    Andersson, Dan I.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Nihlén Fahlquist, Jessica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance2021In: Public Health Ethics, ISSN 1754-9973, E-ISSN 1754-9981, Vol. 14, no 1, p. 1-11, article id phaa033Article in journal (Refereed)
    Abstract [en]

    Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views.

    Download full text (pdf)
    fulltext
  • 6.
    Andersson, Henrik
    et al.
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Univ Borås, Fac Caring Sci Work Life & Social Welf, S-50190 Borås, Sweden..
    Svensson, Anders
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Reg Kronoberg, Dept Ambulance Serv, Växjö, Sweden..
    Frank, Catharina
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden..
    Rantala, Andreas
    Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Lund Univ, Dept Hlth Sci, Lund, Sweden.;Helsingborg Gen Hosp, Emergency Dept, Helsingborg, Sweden..
    Holmberg, Mats
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Centre for Clinical Research Sörmland. Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Reg Sormland, Dept Ambulance Serv, Katrineholm, Sweden..
    Bremer, Anders
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Reg Kalmar Cty, Dept Ambulance Serv, Kalmar, Sweden..
    Ethics education to support ethical competence learning in healthcare: an integrative systematic review2022In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, no 1, article id 29Article, review/survey (Refereed)
    Abstract [en]

    Background Ethical problems in everyday healthcare work emerge for many reasons and constitute threats to ethical values. If these threats are not managed appropriately, there is a risk that the patient may be inflicted with moral harm or injury, while healthcare professionals are at risk of feeling moral distress. Therefore, it is essential to support the learning and development of ethical competencies among healthcare professionals and students. The aim of this study was to explore the available literature regarding ethics education that promotes ethical competence learning for healthcare professionals and students undergoing training in healthcare professions. Methods In this integrative systematic review, literature was searched within the PubMed, CINAHL, and PsycInfo databases using the search terms 'health personnel', 'students', 'ethics', 'moral', 'simulation', and 'teaching'. In total, 40 articles were selected for review. These articles included professionals from various healthcare professions and students who trained in these professions as subjects. The articles described participation in various forms of ethics education. Data were extracted and synthesised using thematic analysis. Results The review identified the need for support to make ethical competence learning possible, which in the long run was considered to promote the ability to manage ethical problems. Ethical competence learning was found to be helpful to healthcare professionals and students in drawing attention to ethical problems that they were not previously aware of. Dealing with ethical problems is primarily about reasoning about what is right and in the patient's best interests, along with making decisions about what needs to be done in a specific situation. Conclusions The review identified different designs and course content for ethics education to support ethical competence learning. The findings could be used to develop healthcare professionals' and students' readiness and capabilities to recognise as well as to respond appropriately to ethically problematic work situations.

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  • 7. Arrhenius, Gustaf
    et al.
    Bykvist, Krister
    Thorburn Stern, Rebecca
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Tersman, Folke
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Department of Philosophy, Ethics and Social Philosophy.
    Etiska avvägningar i pandemitider2021In: I en tid av pandemi: en ESO-antologi med samhällsvetenskapliga reflektioner / [ed] Jonas Eliasson; Lena Unemo, Stockholm: Expertgruppen för studier i offentlig ekonomi, Finansdepartementet , 2021, p. 59-72Chapter in book (Other (popular science, discussion, etc.))
  • 8.
    Asplund, Kjell
    et al.
    Umeå Univ, Dept Publ Hlth & Clin Med, Reimersholmsgatan 59, S-11740 Stockholm, Sweden..
    Hulter Åsberg, Kerstin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Reporting ethical approval in health and social science articles: an audit of adherence to GDPR and national legislation2021In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 22, article id 92Article in journal (Refereed)
    Abstract [en]

    Background: Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation.

    Methods: Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020.

    Results: Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1-2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval.

    Conclusions: We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.

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  • 9.
    Asplund, Kjell
    et al.
    Umeå Univ, Dept Publ Hlth & Clin Med, Umeå, Sweden.;Umeå Univ, Dept Publ Hlth & Clin Med, Regeringsgatan 59, S-11740 Stockholm, Sweden..
    Hulter Åsberg, Kerstin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Cell Biology.
    Reporting Ethics Approval in Articles on Criminality: An Audit of Adherence to Swedish Legislation2023In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 18, no 3, p. 147-153Article in journal (Refereed)
    Abstract [en]

    According to the Swedish Ethics Review Act, research involving personal data on crimes should undergo independent ethics review. To explore the reporting of ethics approval, we extracted information from articles with Swedish personal data on crimes published in 2013-2021. Of the identified 298 articles, 92 (31%) failed to report ethics approval. Failures were particularly common in articles with a qualitative design, single or few authors and when there was a social science focus. Failures varied markedly between universities. We conclude that failures to report compulsory ethics approval are common in articles involving personal data on crime and that these failures vary markedly with the research setting. Several indicators of poor adherence to the Ethics Review Act have been identified.

  • 10.
    Ballantyne, Angela
    et al.
    University of Otago Wellington, Bioeth, Wellington, New Zealand.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Research ethics revised: The new CIOMS guidelines and the World Medical Association Declaration of Helsinki in context2019In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 33, no 3, p. 310-311Article in journal (Other academic)
  • 11.
    Barkane, Irena
    et al.
    Univ Latvia, Riga, Latvia..
    O'Cathaoir, Katharina
    Univ Copenhagen, Copenhagen, Denmark..
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Eenmaa, Helen
    Univ Tartu, Tartu, Estonia..
    The legal implications of covid-19 vaccination certificates: Implementation experiences from Nordic and Baltic region2022In: New legal reality: Challenges and perspectives, Riga: University of Latvia Press, 2022, Vol. 2, p. 209-223Conference paper (Refereed)
    Abstract [en]

    EU Digital green certificates were initially envisaged as a joint EU initiative to facilitate free movement during the pandemic. However, many countries rapidly extended their use in different contexts at the national level, raising serious ethical and legal concerns and questions, in particular, on how to strike a right balance between the interests of the individual and the interests of society. The paper aims to explore the legal implications of using vaccination certificates at the national level, in particular by exploring and comparing practices in selected Nordic and Baltic countries. The article emphasises that, despite COVID-19 crises, the governments should protect fundamental rights and values and when deciding on new restrictions carefully assess their necessity and proportionality. National responses call for a new regulatory framework to ensure responsible use of digital technologies in public interests.

  • 12. Bell, Jessica
    et al.
    Ancillotti, Mirko
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Coathup, Victoria
    Coy, Sarah
    Rigter, Tessel
    Tatum, Travis
    Grewal, Jasjote
    Akcesme, Faruk Berat
    Brkić, Jovana
    Causevic-Ramosevac, Anida
    Milovanovic, Goran
    Nobile, Marianna
    Pavlidis, Cristiana
    Finlay, Teresa
    Kaye, Jane
    Challenges and opportunities for ELSI early career researchers2016In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 17, article id 37Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline.

    MAIN TEXT: Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics.

    CONCLUSION: As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.

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  • 13. Bernstein, Michael H
    et al.
    Rosenfield, Maayan N
    Blease, Charlotte
    General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.
    Magill, Molly
    Terek, Richard M
    Savulescu, Julian
    Beaudoin, Francesca L
    Rich, Josiah D
    Wartolowska, Karolina
    How do US orthopaedic surgeons view placebo-controlled surgical trials?: A pilot online survey study2022In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257Article in journal (Refereed)
    Abstract [en]

    Randomised placebo-controlled trials (RPCTs) are the gold standard for evaluating novel treatments. However, this design is rarely used in the context of orthopaedic interventions where participants are assigned to a real or placebo surgery. The present study examines attitudes towards RPCTs for orthopaedic surgery among 687 orthopaedic surgeons across the USA. When presented with a vignette describing an RPCT for orthopaedic surgery, 52.3% of participants viewed it as 'completely' or 'mostly' unethical. Participants were also asked to rank-order the value of five different types of evidence supporting the efficacy of a surgery, ranging from RPCT to an anecdotal report. Responses regarding RPCTs were polarised with 26.4% viewing it as the least valuable (even less valuable than an anecdote) and 35.7 .% viewing it as the most valuable. Where equipoise exists, if we want to subject orthopaedic surgeries to the highest standard of evidence (RPCTs) before they are implemented in clinical practice, it will be necessary to educate physicians on the value and ethics of placebo surgery control conditions. Otherwise, invasive procedures may be performed without any benefits beyond possible placebo effects.

  • 14.
    Bessani, Alysson
    et al.
    Univ Lisbon, Fac Ciencias, LaSIGE, Lisbon, Portugal..
    Brandt, Joergen
    Humboldt Univ, Berlin, Germany..
    Bux, Marc
    Humboldt Univ, Berlin, Germany..
    Cogo, Vinicius
    Univ Lisbon, Fac Ciencias, LaSIGE, Lisbon, Portugal..
    Dimitrova, Lora
    Charite, Berlin, Germany..
    Dowling, Jim
    KTH Royal Inst Technol, Stockholm, Sweden..
    Gholami, Ali
    KTH Royal Inst Technol, Stockholm, Sweden..
    Hakimzadeh, Kamal
    KTH Royal Inst Technol, Stockholm, Sweden..
    Hummel, Micheal
    Charite, Berlin, Germany..
    Ismail, Mahmoud
    KTH Royal Inst Technol, Stockholm, Sweden..
    Laure, Erwin
    KTH Royal Inst Technol, Stockholm, Sweden..
    Leser, Ulf
    Humboldt Univ, Berlin, Germany..
    Litton, Jan-Eric
    Karolinska Inst, Solna, Sweden..
    Martinez, Roxanna
    Karolinska Inst, Solna, Sweden..
    Niazi, Salman
    KTH Royal Inst Technol, Stockholm, Sweden..
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Zimmermann, Karin
    Charite, Berlin, Germany..
    BiobankCloud: A Platform for the Secure Storage, Sharing, and Processing of Large Biomedical Data Sets2016In: BIOMEDICAL DATA MANAGEMENT AND GRAPH ONLINE QUERYING, 2016, p. 89-105Conference paper (Refereed)
    Abstract [en]

    Biobanks store and catalog human biological material that is increasingly being digitized using next-generation sequencing (NGS). There is, however, a computational bottleneck, as existing software systems are not scalable and secure enough to store and process the incoming wave of genomic data from NGS machines. In the BiobankCloud project, we are building a Hadoop-based platform for the secure storage, sharing, and parallel processing of genomic data. We extended Hadoop to include support for multi-tenant studies, reduced storage requirements with erasure coding, and added support for extensible and consistent metadata. On top of Hadoop, we built a scalable scientific workflow engine featuring a proper workflow definition language focusing on simple integration and chaining of existing tools, adaptive scheduling on Apache Yarn, and support for iterative dataflows. Our platform also supports the secure sharing of data across different, distributed Hadoop clusters. The software is easily installed and comes with a user-friendly web interface for running, managing, and accessing data sets behind a secure 2-factor authentication. Initial tests have shown that the engine scales well to dozens of nodes. The entire system is open-source and includes pre-defined workflows for popular tasks in biomedical data analysis, such as variant identification, differential transcriptome analysis using RNA-Seq, and analysis of miRNA-Seq and ChIP-Seq data.

  • 15. Bjugn, Roger
    et al.
    Farisco, Michele
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hostmaelingen, Njal
    Simeon-Dubach, Daniel
    Petrini, Carlo
    What Are Some of the ELSI Challenges of International Collaborations Involving Biobanks, Global Sample Collection, and Genomic Data Sharing and How Should They Be Addressed?2015In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 13, no 2, p. 70-71Article in journal (Refereed)
  • 16.
    Björk, Joar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Reg Kronoberg, Dept Res & Dev, Växjö, Sweden; Karolinska Inst, Stockholm Ctr Healthcare Eth CHE, LIME, Stockholm, Sweden.
    "It is very hard to just accept this": a qualitative study of palliative care teams' ethical reasoning when patients do not want information2024In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 23, no 1, article id 91Article in journal (Refereed)
    Abstract [en]

    Background

    The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed.

    Methods

    The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data.

    Results

    The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way.

    Conclusions

    In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient’s wishes, or to provide information with the patient’s best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.

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  • 17.
    Blease, Charlotte
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group. Beth Israel Deaconess Med Ctr, Digital Psychiat, Boston, MA USA.
    Open AI meets open notes: surveillance capitalism, patient privacy and online record access2024In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 50, no 2, p. 84-89Article in journal (Refereed)
    Abstract [en]

    Patient online record access (ORA) is spreading worldwide, and in some countries, including Sweden, and the USA, access is advanced with patients obtaining rapid access to their full records. In the UK context, from 31 October 2023 as part of the new NHS England general practitioner (GP) contract it will be mandatory for GPs to offer ORA to patients aged 16 and older. Patients report many benefits from reading their clinical records including feeling more empowered, better understanding and remembering their treatment plan, and greater awareness about medications including possible adverse effects. However, a variety of indirect evidence suggests these benefits are unlikely to accrue without supplementation from internet-based resources. Using such routes to augment interpretation of the data and notes housed in electronic health records, however, comes with trade-offs in terms of exposing sensitive patient information to internet corporations. Furthermore, increased work burdens on clinicians, including the unique demands of ORA, combined with the easy availability and capability of a new generation of large language model (LLM)-powered chatbots, create a perfect collision course for exposing sensitive patient information to private tech companies. This paper surveys how ORA intersects with internet associated privacy risks and offers a variety of multilevel suggestions for how these risks might be better mitigated.

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  • 18.
    Blease, Charlotte
    et al.
    Program in Placebo Studies, General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA, 02215, USA;School of Psychology, University College Dublin, Dublin, Ireland.
    Annoni, Marco
    Overcoming disagreement: a roadmap for placebo studies2019In: Biology & Philosophy, ISSN 0169-3867, E-ISSN 1572-8404, Vol. 34, no 2, article id 18Article in journal (Refereed)
    Abstract [en]

    In the field of placebo studies residual disagreement about the terminology placebo' and placebo effect' still persists. We differentiate between the conceptualization of placebos in clinical trials; and placebo effects understood as a psychobiological phenomenon. With respect to the latter, we argue that a scientific placebo paradigm' has emerged, indicating thatat least among placebo scientiststhere exists relatively stable consensus about how to conceive of placebo effects. We claim that existence of a placebo paradigm does not protect concepts from revision; nonetheless, we argue that scientific progress is dependent on, and guided by relative conceptual stability. Therefore, to mount persuasive arguments for conceptual revision in respect of placebo effects' we argue, critics either need to defend the claim that a placebo paradigm is not underway, or that there are major scientific failings in respect of it. With these considerations in mind we examine three alternative proposals for conceptual reform: Grunbaum/Howick's relativity models of placebo concepts; Moerman/Brody's meaning response; and Nunn/Turner's proposal for conceptual eliminativism. We derive two conclusions from this evaluation. First, we conclude that no convincing arguments have so far been presented for conceptual overhaul of placebo effects.' Notwithstanding this analysis, we conclude that refinement of this concept is likely. Second, we agree with Turner and Nunn that the term placebo' in the context of randomized controlled trials remains a source of confusion for many researchers, risking the design and scientific integrity of clinical findings. Therefore, in these contexts, replacing the term placebo' with control' is justified.

  • 19.
    Blease, Charlotte
    et al.
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center/Harvard Medical School, 330 Brookline Avenue, Boston, MA 02215, USA; School of Psychology, University College Dublin, Dublin, Ireland.
    Bell, Sigall K
    Patients as diagnostic collaborators: sharing visit notes to promote accuracy and safety2019In: Diagnosis, ISSN 2194-8011, E-ISSN 2194-802X, Vol. 6, no 3, p. 213-221Article in journal (Refereed)
    Abstract [en]

    Error resulting from missed, delayed, or wrong diagnoses is estimated to occur in 10-15% of ambulatory and inpatient encounters, leading to serious harm in around half of such cases. When it comes to conceptualizing diagnostic error, most research has focused on factors pertaining to: (a) physician cognition and (b) ergonomic or systems factors related to the physician's working environment. A third factor - the role of patients in diagnostic processes - remains relatively under-investigated. Yet, as a growing number of researchers acknowledge, patients hold unique knowledge about themselves and their healthcare experience, and may be the most underutilized resource for mitigating diagnostic error. This opinion article examines recent findings from patient surveys about sharing visit notes with patients online. Drawing on these survey results, we suggest three ways in which sharing visit notes with patients might enhance diagnostic processes: (1) avoid delays and missed diagnoses by enhancing timely follow up of recommended tests, results, and referrals; (2) identify documentation errors that may undermine diagnostic accuracy; and (3) strengthen patient-clinician relationships thereby creating stronger bidirectional diagnostic partnerships. We also consider the potential pitfalls or unintended consequences of note transparency, and highlight areas in need of further research.

  • 20.
    Blease, Charlotte
    et al.
    Program in Placebo Studies, Department of General Medicine and Primary Care Research, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA;School of Psychology, University College Dublin, Dublin, Ireland .
    Bernstein, Michael H
    Locher, Cosima
    Open-label placebo clinical trials: is it the rationale, the interaction or the pill?2020In: BMJ Evidence-Based Medicine, ISSN 2515-446X, E-ISSN 2515-4478, Vol. 25, no 5, p. 159-165Article in journal (Refereed)
  • 21.
    Blease, Charlotte
    et al.
    Division of General Medicine, Beth Israel Deaconess Medical Center, Boston, USA.
    DesRoches, Catherine
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Hayden, Adam
    Rexhepi, Hanife
    Salmi, Liz
    Knowledge, power, and patients: The ethics of open notes2021In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257Article in journal (Other (popular science, discussion, etc.))
  • 22.
    Blease, Charlotte
    et al.
    General Medicine and Primary Care Research, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA, 02215, USA;School of Psychology, University College Dublin, Belfield, Dublin 4, Ireland.
    Geraghty, Keith
    Are ME/CFS Advocacy Organisations militant?: Patient Protest in a Medical Controversy2018In: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 15, no 3, p. 393-401Article in journal (Refereed)
    Abstract [en]

    Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFSand by extension, ME/CFS patient organizations (POs)exhibit militant social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of militant patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

  • 23.
    Blease, Charlotte
    et al.
    School of Psychology, University College Dublin, Dublin 4, Ireland;Program in Placebo Studies, General Medicine and Primary Care, Beth Israel Deaconess Medical Center Harvard Medical School, Boston, MA, USA.
    Kelley, John M
    Trachsel, Manuel
    Informed consent in psychotherapy: implications of evidence-based practice2018In: Journal of Contemporary Psychotherapy, ISSN 0022-0116, E-ISSN 1573-3564, Vol. 48, no 2, p. 69-78Article in journal (Refereed)
    Abstract [en]

    Evidence-based practice in psychotherapy carries widely unacknowledged consequences for ethical clinical practice. Informed consent to psychological treatments is an ethical imperative in clinical practice, and there is an ethical obligation for psychiatrists, psychotherapists, and clinical psychologists to provide adequate disclosure to patients about treatments. This is codified within the professional guidelines of the American Psychological Association (APA) and the American Medical Association. Given the APA's commitment to evidence-based practice, the objective of this paper is to argue that the provision of information about how treatments work should be based on evidence-based research on psychotherapeutic treatments. Case-based scenarios are used to illustrate a range of ethical issues pertaining to evidence-based practice and informed consent in psychotherapy. This paper argues that informed consent processes in psychotherapy must be commensurate with the latest integrated findings on empirically-supported treatments; process research into psychological treatments; research into therapist expertise; as well as evidence about individual patients' characteristics, culture, and preferences. Our conclusions for practice are challenging: standard ethical interpretations of informed consent to psychotherapy must go further. It is not sufficient for therapists only to describe the specific techniques associated with particular treatment modalities, it is also necessary to disclose information about nonspecific factors. There appears to be consensus among therapists and psychotherapy researchers that these factors are relevant to successful treatment outcome. Our paper aims to launch fresh, serious, pragmatic debate in professional psychotherapy about necessary revisions of ethical codes with respect to information disclosure.

  • 24.
    Blease, Charlotte
    et al.
    Interdisciplinary Health Research, Beth Israel Deaconess Medical Center/Harvard Medical School.
    Kelley, John M.
    Trachsel, Manuel
    Patient information on evidence and clinical effectiveness of psychotherapy2020In: Oxford Handbook of Psychotherapy Ethics / [ed] Manuel Trachsel, Jens Gaab, Nikola Biller-Andorno, Şerife Tekin & John Z. Sadler, Oxford: Oxford University Press, 2020, p. 312-329Chapter in book (Refereed)
    Abstract [en]

    This chapter focuses on what information should be provided to patients about the evidence base supporting the clinical effectiveness of psychotherapy. In particular, the authors consider whether research on the relative efficacy of different forms of psychotherapy should be provided to patients, as well as whether patients should be provided with information on the relative importance of common factors versus specific factors as the causal agents of clinical improvement. After a critical review and discussion of the relatively few scholarly papers that have previously addressed this question, the authors conclude that patients should be provided with an honest, transparent, and impartial summary of the evidence related to their treatment options including information about the common factors. The authors offer this conclusion even while acknowledging that considerable controversy persists about how to interpret the psychotherapy research evidence base. Finally, the authors strongly support continued research into these questions, especially given the relatively limited scholarly attention they have received to date.

  • 25.
    Blease, Charlotte
    et al.
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, United States of America .
    Kharko, Anna
    University of Plymouth.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    O'Neill, Stephen
    Wachenheim, Deborah
    Salmi, Liz
    Harcourt, Kendall
    Locher, Cosima
    DesRoches, Catherine M.
    Torous, John
    The benefits and harms of open notes in mental health: A Delphi survey of international experts2021In: PLOS ONE, E-ISSN 1932-6203, Vol. 16, no 10, article id e0258056Article in journal (Refereed)
    Abstract [en]

    IMPORTANCE: As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records.

    OBJECTIVE: To solicit the view of an international panel of experts on the effects on mental health patients, including possible benefits and harms, of accessing their clinical notes.

    DESIGN: An online 3-round Delphi poll.

    SETTING: Online.

    PARTICIPANTS: International experts identified as clinicians, chief medical information officers, patient advocates, and informaticians with extensive experience and/or research knowledge about patient access to mental health notes.

    MAIN OUTCOMES, AND MEASURES: An expert-generated consensus on the benefits and risks of sharing mental health notes with patients.

    RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items: 42 potential benefits, and 48 potential harms. A total of 56 of 70 (80%) experts responded to Round 2, and 52 of 56 (93%) responded to Round 3. Consensus was reached on 65 of 88 (74%) of survey items. There was consensus that offering online access to mental health notes could enhance patients' understanding about their diagnosis, care plan, and rationale for treatments, and that access could enhance patient recall and sense of empowerment. Experts also agreed that blocking mental health notes could lead to greater harms including increased feelings of stigmatization. However, panelists predicted there could be an increase in patients demanding changes to their clinical notes, and that mental health clinicians would be less detailed/accurate in documentation.

    CONCLUSIONS AND RELEVANCE: This iterative process of survey responses and ratings yielded consensus that there would be multiple benefits and few harms to patients from accessing their mental health notes. Questions remain about the impact of open notes on professional autonomy, and further empirical work into this practice innovation is warranted.

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  • 26.
    Blease, Charlotte
    et al.
    Beth Israel Deaconess Med Ctr, Div Gen Med, Boston, MA 02215 USA.
    O'Neill, Stephen F
    Beth Israel Deaconess Med Ctr, Div Gen Med, Boston, MA 02215 USA; Harvard Med Sch, Boston, MA 02115 USA.
    Torous, John
    Harvard Med Sch, Boston, MA 02115 USA; Beth Israel Deaconess Med Ctr, Dept Psychiat, Boston, MA 02215 USA.
    DesRoches, Catherine M
    Beth Israel Deaconess Med Ctr, Div Gen Med, Boston, MA 02215 USA; Harvard Med Sch, Boston, MA 02115 USA.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines2021In: Journal of Nervous and Mental Disease, ISSN 0022-3018, E-ISSN 1539-736X, Vol. 209, no 4, p. 265-269Article in journal (Refereed)
    Abstract [en]

    ABSTRACT: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines.

  • 27.
    Blease, Charlotte
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group.
    Torous, John
    McMillan, Brian
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group.
    Mandl, Kenneth D
    Generative Language Models and Open Notes: Exploring the Promise and Limitations2024In: JMIR Med Educ, ISSN 2369-3762, Vol. 10Article in journal (Refereed)
    Abstract [en]

    Patients’ online record access (ORA) is growing worldwide. In some countries, including the United States and Sweden, access is advanced with patients obtaining rapid access to their full records on the web including laboratory and test results, lists of prescribed medications, vaccinations, and even the very narrative reports written by clinicians (the latter, commonly referred to as “open notes”). In the United States, patient’s ORA is also available in a downloadable form for use with other apps. While survey studies have shown that some patients report many benefits from ORA, there remain challenges with implementation around writing clinical documentation that patients may now read. With ORA, the functionality of the record is evolving; it is no longer only an aide memoire for doctors but also a communication tool for patients. Studies suggest that clinicians are changing how they write documentation, inviting worries about accuracy and completeness. Other concerns include work burdens; while few objective studies have examined the impact of ORA on workload, some research suggests that clinicians are spending more time writing notes and answering queries related to patients’ records. Aimed at addressing some of these concerns, clinician and patient education strategies have been proposed. In this viewpoint paper, we explore these approaches and suggest another longer-term strategy: the use of generative artificial intelligence (AI) to support clinicians in documenting narrative summaries that patients will find easier to understand. Applied to narrative clinical documentation, we suggest that such approaches may significantly help preserve the accuracy of notes, strengthen writing clarity and signals of empathy and patient-centered care, and serve as a buffer against documentation work burdens. However, we also consider the current risks associated with existing generative AI. We emphasize that for this innovation to play a key role in ORA, the cocreation of clinical notes will be imperative. We also caution that clinicians will need to be supported in how to work alongside generative AI to optimize its considerable potential.

  • 28. Borry, Pascal
    et al.
    Cornel, Martina C
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market.2010In: Journal of community genetics, ISSN 1868-310X, Vol. 1, no 3, p. 101-106Article in journal (Refereed)
    Abstract [en]

    In recent years, various private companies have been marketing and offering genetic tests directly to consumers. This article reviews the recent history of this commercial phenomenon. In particular, we discuss and describe the following subjects: (1) the factors that allowed for the creation of the direct-to-consumer (DTC) genetic testing (GT) market; (2) information regarding the size and potential success or failure of the DTC GT market; (3) recent changes in the DTC GT market; and (4) the recent events that may have an impact on the regulatory oversight of DTC genetic testing and the future evolution of this market. This review of factors suggests that despite the possibility of a change of business model as well as increased regulation, the commercialization of genetic testing is here to stay. As such it is important to pay close attention not only to the science underlying these tests but also to the ethical, legal, and social issues.

  • 29. Borry, Pascal
    et al.
    Henneman, Lidewij
    Lakeman, Phillis
    ten Kate, Leo P
    Cornel, Martina C
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Preconceptional genetic carrier testing and the commercial offer directly-to-consumers.2011In: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 26, no 5, p. 972-7Article in journal (Refereed)
    Abstract [en]

    Recently, a number of commercial companies are offering preconceptional carrier tests directly-to-consumers. This offer raises a number of concerns and issues above and beyond those encountered with preconceptional tests offered within the traditional health care setting. In order to bring some of these issues to light and to initiate dialogue on this topic, this article discusses the following issues: the current offer of preconceptional carrier tests (until the end of 2010) through online commercial companies; the implications for the informed consent procedure and the need for good information; the need for medical supervision and follow-up; and the appropriate use of existing resources. The article concludes with some reflections about the potential sustainability of the offer of preconceptional carrier tests directly-to-consumers.

  • 30. Borry, Pascal
    et al.
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sénécal, Karine
    Avard, Denise
    Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.2010In: Familial Cancer, ISSN 1389-9600, E-ISSN 1573-7292, Vol. 9, no 1, p. 51-9Article in journal (Refereed)
    Abstract [en]

    More and more companies are advertising and selling genetic tests directly to consumers. Considering the ethical, legal, and psychological concerns surrounding genetic testing in minors, a study of companies' websites was performed in order to describe and analyze their policies with respect to this issue. Of the 29 companies analyzed, 13 did not provide any information about this matter, eight companies allowed genetic testing upon parental request, four companies stated that their website is not directed to children under 18 years, and four companies suggested that in order to be tested, applicants should have reached the age of legal majority. If private companies offer genetic tests which are also offered in a clinical setting, can they be expected to adhere to the existing clinical guidelines with regard to these tests? If so, a certain ambiguity exists. Many companies are emphasizing in their disclaimers that their services are not medical services and should not be used as a basis for making medical decisions. Nonetheless, it remains debatable whether genetic testing in minors would be appropriate in this context. In line with the Advisory Committee on Genetic Testing, the Human Genetics Commission addressed the problem of non-consensual testing and recommended not to supply genetic testing services directly to those under the age of 16 or to those not able to make a competent decision regarding testing.

  • 31. Borry, Pascal
    et al.
    Rusu, Olivia
    Dondorp, Wybo
    De Wert, Guido
    Knoppers, Bartha Maria
    Howard, Heidi Carmen
    Anonymity 2.0: direct-to-consumer genetic testing and donor conception.2014In: Fertility and Sterility, ISSN 0015-0282, E-ISSN 1556-5653, Vol. 101, no 3, p. 630-2Article in journal (Refereed)
  • 32. Borry, Pascal
    et al.
    Rusu, Olivia
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Genetic testing: anonymity of sperm donors under threat.2013In: Nature, ISSN 0028-0836, E-ISSN 1476-4687, Vol. 496, no 7444, p. 169-Article in journal (Refereed)
  • 33. Borry, Pascal
    et al.
    van Hellemondt, Rachel E
    Sprumont, Dominique
    Jales, Camilla Fittipaldi Duarte
    Rial-Sebbag, Emmanuelle
    Spranger, Tade Matthias
    Curren, Liam
    Kaye, Jane
    Nys, Herman
    Howard, Heidi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Legislation on direct-to-consumer genetic testing in seven European countries.2012In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 20, no 7, p. 715-21Article in journal (Refereed)
    Abstract [en]

    An increasing number of private companies are now offering direct-to-consumer (DTC) genetic testing services. Although a lot of attention has been devoted to the regulatory framework of DTC genetic testing services in the USA, only limited information about the regulatory framework in Europe is available. We will report on the situation with regard to the national legislation on DTC genetic testing in seven European countries (Belgium, the Netherlands, Switzerland, Portugal, France, Germany, the United Kingdom). The paper will address whether these countries have legislation that specifically address the issue of DTC genetic testing or have relevant laws that is pertinent to the regulatory control of these services in their countries. The findings show that France, Germany, Portugal and Switzerland have specific legislation that defines that genetic tests can only be carried out by a medical doctor after the provision of sufficient information concerning the nature, meaning and consequences of the genetic test and after the consent of the person concerned. In the Netherlands, some DTC genetic tests could fall under legislation that provides the Minister the right to refuse to provide a license to operate if a test is scientifically unsound, not in accordance with the professional medical practice standards or if the expected benefit is not in balance with the (potential) health risks. Belgium and the United Kingdom allow the provision of DTC genetic tests.

  • 34.
    Bradby, Hannah
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Sociology.
    (Imaginary) healthcare heroes – Ms Conscientious (#2 in an occasional series)2015Other (Other (popular science, discussion, etc.))
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  • 35.
    Budin-Ljosne, Isabelle
    et al.
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway..
    Teare, Harriet J. A.
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Kaye, Jane
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Beck, Stephan
    UCL, UCL Canc Inst, London, England..
    Bentzen, Heidi Beate
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway.;Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway..
    Caenazzo, Luciana
    Univ Padua, Padua, Italy..
    Collett, Clive
    Hlth Res Author, London, England..
    D'Abramo, Flavio
    Free Univ Berlin, Focus Area DynAge, Berlin, Germany..
    Felzmann, Heike
    NUI Galway, Ctr Bioeth Res & Anal, Galway, Ireland..
    Finlay, Teresa
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Javaid, Muhammad Kassim
    Univ Oxford, Nuffield Dept Orthopaed Rheumatol & Musculoskelet, NIHR Musculoskeletal Biomed Res Unit, Oxford, England..
    Jones, Erica
    UCL, UCL Canc Inst, London, England..
    Katic, Visnja
    Univ Rijeka, Sch Med, Rijeka, Croatia..
    Simpson, Amy
    Genet Alliance UK, London, England..
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. EURAC, Ctr Biomed, Bolzano, Italy..
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research2017In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, article id 4Article in journal (Refereed)
    Abstract [en]

    Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

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  • 36. Cambon-Thomsen, Anne
    et al.
    Bovenberg, Jasper
    Lavitrano, Marialuisa
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Mayrhofer, Michaela
    Litton, Jan-Eric
    Ethical, Legal and Societal Implications of Biobanking at European Level: A Common Service of the European Biobank and Biomolecular Research Infrastructure2015In: Tissue Antigens, ISSN 0001-2815, E-ISSN 1399-0039, Vol. 85, no 5, p. 372-372Article in journal (Refereed)
  • 37.
    Carrieri, Daniele
    et al.
    Univ Exeter, Egenis, England.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Benjamin, Caroline
    Univ Cent Lancashire UCLan, Sch Community Hlth & Midwifery, Preston, Lancs, England;Liverpool Womens NHS Hosp Trust, Merseyside & Cheshire Clin Genet Serv, Liverpool, Merseyside, England.
    Clarke, Angus J.
    Cardiff Univ, Sch Med, Cardiff, S Glam, Wales.
    Dheensa, Sandi
    Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England.
    Doheny, Shane
    Cardiff Univ, Sch Med, Cardiff, S Glam, Wales.
    Hawkins, Naomi
    Univ Exeter, Law Sch, Exeter, Devon, England.
    Halbersma-Konings, Tanya F.
    Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands.
    Jackson, Leigh
    Univ Exeter, Sch Med, Egenis, England.
    Kayserili, Hulya
    Koc Univ KUSoM, Sch Med, Med Genet Dept, Istanbul, Turkey.
    Kelly, Susan E.
    Univ Exeter, Egenis, England.
    Lucassen, Anneke M.
    Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England;Univ Hosp Southampton NHS Fdn Trust, Wessex Clin Genet Serv, Southampton, Hants, England.
    Mendes, Alvaro
    Univ Porto, I3S, IBMC Inst Mol & Cell Biol, UnIGENe, Porto, Portugal;Univ Porto, I3S, IBMC Inst Mol & Cell Biol, CGPP Ctr Predict & Prevent Genet, Porto, Portugal.
    Rial-Sebbag, Emmanuelle
    Univ Paul Sabatier Toulouse III, INSERM, UMR 1027, Toulouse, France.
    Stefansdottir, Vigdis
    Natl Univ Hosp Iceland, Dept Genet & Mol Med, Landspitali, Reykjavik, Iceland.
    Turnpenny, Peter D.
    Royal Devon & Exeter NHS Fdn Trust, Clin Genet, Exeter, Devon, England.
    van El, Carla G.
    Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands.
    van Langen, Irene M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands.
    Cornel, Martina C.
    Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands.
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, ON, Canada.
    Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics2019In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, no 2, p. 169-182Article in journal (Refereed)
    Abstract [en]

    Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.

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  • 38. Corradetti, Claudio
    et al.
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Patientcentricity2012In: Studies in Ethics, Law, and Technology, E-ISSN 1941-6008, Vol. 6, no 1, p. 1-2Article in journal (Refereed)
  • 39.
    Das, Jayatri
    et al.
    Franklin Inst, Philadelphia, PA USA..
    Forlini, Cynthia
    Deakin Univ, Sch Med, Geelong, Vic, Australia..
    Porcello, Darrell M.
    Univ Calif, Lawrence Hall Sci, Berkeley, CA USA.;Childrens Creat Museum, San Francisco, CA USA..
    Rommelfanger, Karen S.
    Emory Univ, Dept Neurol, Atlanta, GA 30322 USA.;Inst Neuroeth Think & Tank, Atlanta, GA 30322 USA..
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. NeuroeticaBA, Buenos Aires, Argentina..
    Neuroscience is ready for neuroethics engagement2022In: Frontiers in Communication, E-ISSN 2297-900X, Vol. 7, article id 909964Article in journal (Refereed)
    Abstract [en]

    Neuroscience research has been expanding, providing new insights into brain and nervous system function and potentially transformative technological applications. In recent years, there has been a flurry of prominent international scientific academies and intergovernmental organizations calling for engagement with different publics on social, ethical, and regulatory issues related to neuroscience and neurotechnology advances. Neuroscientific activities and outputs are value-laden; they reflect the cultural, ethical, and political values that are prioritized in different societies at a given time and impact a variety of publics beyond the laboratory. The focus on engagement in neuroscience recognizes the breadth and significance of current neuroscience research whilst acknowledging the need for a neuroethical approach that explores the epistemic and moral values influencing the neuroscientific agenda. The field of neuroethics is characterized by its focus on the social, legal, and philosophical implications of neuroscience including its impact on cultural assumptions about the cognitive experience, identity, consciousness, and decision-making. Here, we outline a proposal for neuroethics engagement that reflects an enhanced and evolving understanding of public engagement with neuroethical issues to create opportunities to share ideation, decision-making, and collaboration in neuroscience endeavors for the benefit of society. We demonstrate the synergies between public engagement and neuroethics scholarship and activities that can guide neuroethics engagement.

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  • 40. Daulaire, Nils
    et al.
    Bang, Abhay
    Tomson, Goran
    Kalyango, Joan N.
    Cars, Otto
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Infectious Diseases.
    Universal Access to Effective Antibiotics is Essential for Tackling Antibiotic Resistance2015In: Journal of Law, Medicine & Ethics, ISSN 1073-1105, E-ISSN 1748-720X, Vol. 43, no S3, p. 17-21Article in journal (Refereed)
    Abstract [en]

    Universal access to effective antimicrobials is essential to the realization of the right to health. At present, 5.7 million people die from treatable infections each year because they lack this access. Yet, community-based diagnosis and appropriate treatment for many of the leading causes of avoidable infectious deaths has been shown to be feasible and effective, demonstrating that strategies to reach the under-served need to receive high priority. This is a necessary part of a broad strategy to assure the long-term benefits of antimicrobials and to combat antimicrobial resistance, both because the lack of systematic and rigorous efforts to assure effective coverage increases the likelihood of antimicrobial resistance, and because global efforts aimed at antimicrobial stewardship and innovation cannot succeed without explicitly addressing the needs of the under-served. Elements of this strategy will include clear evidence-based treatment protocols, a robust international framework and locally tailored regulations, active engagement with communities and local health providers, strong attention to program management and cost considerations, a focus on the end user, and robust surveillance and response to emerging resistance patterns. Only by balancing the needs of universal access with stewardship and innovation, and assuring that they are mutually reinforcing can a global strategy hope to effectively address antimicrobial resistance.

  • 41. De Wert, G.
    et al.
    Heindryckx, B.
    Pennings, G.
    Clarke, A.
    Eichenlaub-Ritter, U.
    van El, Carla G.
    Forzano, F.
    Goddijn, M.
    Howard, Heidi C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Radojkovic, D.
    Rial-Sebbag, E.
    Dondorp, W.
    Tarlatzis, B. C.
    Cornel, M. C.
    Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 4, p. 450-470Article in journal (Refereed)
    Abstract [en]

    Technological developments in gene editing raise high expectations for clinical applications, including editing of the germline. The European Society of Human Reproduction and Embryology (ESHRE) and the European Society of Human Genetics (ESHG) together developed a Background document and Recommendations to inform and stimulate ongoing societal debates. This document provides the background to the Recommendations. Germline gene editing is currently not allowed in many countries. This makes clinical applications in these countries impossible now, even if germline gene editing would become safe and effective. What were the arguments behind this legislation, and are they still convincing? If a technique could help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints? This Background document summarizes the scientific developments and expectations regarding germline gene editing, legal regulations at the European level, and ethics for three different settings (basic research, preclinical research and clinical applications). In ethical terms, we argue that the deontological objections (e.g., gene editing goes against nature) do not seem convincing while consequentialist objections (e.g., safety for the children thus conceived and following generations) require research, not all of which is allowed in the current legal situation in European countries. Development of this Background document and Recommendations reflects the responsibility to help society understand and debate the full range of possible implications of the new technologies, and to contribute to regulations that are adapted to the dynamics of the field while taking account of ethical considerations and societal concerns.

  • 42.
    de Wert, Guido
    et al.
    Maastricht Univ, Dept Hlth Eth & Soc, Res Inst GROW & CAPHRI, Fac Hlth Med & Life Sci, POB 616, NL-6200 MD Maastricht, Netherlands..
    Heindryckx, Bjoern
    Ghent Univ Hosp, Dept Reprod Med, Ghent Fertil & Stem Cell Team G FaST, C Heymanslaan 10, B-9000 Ghent, Belgium..
    Pennings, Guido
    Univ Ghent, Bioeth Inst Ghent, Dept Philosophy & Moral Sci, Blandijnberg 2, B-9000 Ghent, Belgium..
    Clarke, Angus
    Univ Hosp Wales, Inst Med Genet, Heath Pk, Cardiff CF14 4XN, Wales..
    Eichenlaub-Ritter, Ursula
    Univ Bielefeld, Inst Gene Technol Microbiol, Fac Biol, Postfach 10 01 31, D-33501 Bielefeld, Germany..
    van El, Carla G.
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Van der Boechorststr 7, NL-1081 BT Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, Amsterdam Publ Hlth Res Inst, Van der Boechorststr 7, NL-1081 BT Amsterdam, Netherlands..
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, Guys Hosp, 7th Floor Borough Wing, London SE1 9RT, England..
    Goddijn, Mariette
    Acad Med Ctr, Dept Obstet & Gynecol, Ctr Reprod Med, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands..
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Radojkovic, Dragica
    Univ Belgrade, Inst Mol Genet & Genet Engn, Lab Mol Biol, POB 23, Belgrade 11010, Serbia..
    Rial-Sebbag, Emmanuelle
    Univ Toulouse Univ Paul Sabatier Toulouse III, INSERM, UMR 1027, Allees Jules Guesdes 37, F-31073 Toulouse, France..
    Dondorp, Wybo
    Maastricht Univ, Dept Hlth Eth & Soc, Res Inst GROW & CAPHRI, Fac Hlth Med & Life Sci, POB 616, NL-6200 MD Maastricht, Netherlands..
    Tarlatzis, Basil C.
    Aristotle Univ Thessaloniki, Dept Obstet & Gynecol 1, Sch Med, 9 Agias Sofias Str, Thessaloniki 54623, Greece..
    Cornel, Martina C.
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Van der Boechorststr 7, NL-1081 BT Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, Amsterdam Publ Hlth Res Inst, Van der Boechorststr 7, NL-1081 BT Amsterdam, Netherlands..
    Responsible innovation in human germline gene editing. Background document to the recommendations of ESHG and ESHRE2018In: HUMAN REPRODUCTION OPEN, ISSN 2399-3529, Vol. 2018, no 1, article id hox024Article in journal (Refereed)
    Abstract [en]

    Technological developments in gene editing raise high expectations for clinical applications, including editing of the germline. The European Society of Human Reproduction and Embryology (ESHRE) and the European Society of Human Genetics (ESHG) together developed a Background document and Recommendations to inform and stimulate ongoing societal debates. This document provides the background to the Recommendations. Germline gene editing is currently not allowed in many countries. This makes clinical applications in these countries impossible now, even if germline gene editing would become safe and effective. What were the arguments behind this legislation, and are they still convincing? If a technique could help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints? This Background document summarizes the scientific developments and expectations regarding germline gene editing, legal regulations at the European level, and ethics for three different settings (basic research, pre-clinical research and clinical applications). In ethical terms, we argue that the deontological objections (e.g. gene editing goes against nature) do not seem convincing while consequentialist objections (e.g. safety for the children thus conceived and following generations) require research, not all of which is allowed in the current legal situation in European countries. Development of this Background document and Recommendations reflects the responsibility to help society understand and debate the full range of possible implications of the new technologies, and to contribute to regulations that are adapted to the dynamics of the field while taking account of ethical considerations and societal concerns.

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  • 43.
    de Wert, Guido
    et al.
    Maastricht Univ, Fac Hlth Med & Life Sci, Res Inst GROW, Dept Hlth Eth & Soc, POB 616, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Fac Hlth Med & Life Sci, Res Inst CAPHRI, Dept Hlth Eth & Soc, POB 616, NL-6200 MD Maastricht, Netherlands..
    Pennings, Guido
    Univ Ghent, Bioeth Inst Ghent, Dept Philosophy & Moral Sci, Blandijnberg 2, B-9000 Ghent, Belgium..
    Clarke, Angus
    Univ Hosp Wales, Inst Med Genet, Heath Pk, Cardiff CF14 4XN, Wales..
    Eichenlaub-Ritter, Ursula
    Univ Bielefeld, Inst Gene Technol Microbiol, Fac Biol, Postfach 10 01 31, D-33501 Bielefeld, Germany..
    van El, Carla G.
    Vrije Univ Amsterdam, Med Ctr, Dept Clin Genet, Sect Community Genet, Van Boechorststr 7, NL-1081 BT Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Van Boechorststr 7, NL-1081 BT Amsterdam, Netherlands..
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Guys Hosp, Clin Genet Dept, 7th Floor,Borough Wing, London SE1 9RT, England..
    Goddijn, Mariette
    Acad Med Ctr, Ctr Reprod Med, Dept Obstet & Gynecol, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands..
    Heindryckx, Bjoern
    Ghent Univ Hosp, Ghent Fertil & Stem Cell Team G FaST, Dept Reprod Med, C Heymanslaan 10, B-9000 Ghent, Belgium..
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Radojkovic, Dragica
    Univ Belgrade, Inst Mol Genet & Genet Engn, Lab Mol Biol, POB 23, Belgrade 11010, Serbia..
    Rial-Sebbag, Emmanuelle
    Univ Paul Sabatier Toulouse III, Univ Toulouse, INSERM, UMR 1027,Emmanuelle Rial Sebbag, Allees Jules Guesdes 37, F-31073 Toulouse, France..
    Tarlatzis, Basil C.
    Aristotle Univ Thessaloniki, Sch Med, Dept Obstet & Gynecol 1, 9 Agias Sofias Str, Thessaloniki 54623, Greece..
    Cornel, Martina C.
    Vrije Univ Amsterdam, Med Ctr, Dept Clin Genet, Sect Community Genet, Van Boechorststr 7, NL-1081 BT Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Van Boechorststr 7, NL-1081 BT Amsterdam, Netherlands..
    Human germline gene editing. Recommendations of ESHG and ESHRE2018In: HUMAN REPRODUCTION OPEN, ISSN 2399-3529, Vol. 2018, no 1, article id hox025Article in journal (Refereed)
    Abstract [en]

    Technological developments in gene editing raise high expectations for clinical applications, first of all for somatic gene editing but in theory also for germline gene editing (GLGE). GLGE is currently not allowed in many countries. This makes clinical applications in these countries impossible now, even if GLGE would become safe and effective. What were the arguments behind this legislation, and are they still convincing? If a technique can help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints? The European Society of Human Reproduction and Embryology (ESHRE) and the European Society of Human Genetics (ESHG) together developed a Background document and Recommendations to inform and stimulate ongoing societal debates. After consulting its membership and experts, this final version of the Recommendations was endorsed by the Executive Committee and the Board of the respective Societies in May 2017. Taking account of ethical arguments, we argue that both basic and pre-clinical research regarding human GLGE can be justified, with conditions. Furthermore, while clinical GLGE would be totally premature, it might become a responsible intervention in the future, but only after adequate pre-clinical research. Safety of the child and future generations is a major concern. Future discussions must also address priorities among reproductive and potential non-reproductive alternatives, such as PGD and somatic editing, if that would be safe and successful. The prohibition of human germline modification, however, needs renewed discussion among relevant stakeholders, including the general public and legislators.

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    fulltext
  • 44.
    de Wert, Guido
    et al.
    Department of Health, Ethics and Society, Research Institutes GROW and CAPHRI, Fac. of Health, Medicine and the Life Sciences, Maastricht University, Maastricht, The Netherlands.
    Pennings, Guido
    Bioethics Institute Ghent, Department of Philosophy and Moral Science, Ghent University, Ghent, Belgium.
    Clarke, Angus
    School of Medicine, Cardiff University, Cardiff, UK.
    Eichenlaub-Ritter, Ursula
    Institute of Gene Technology/Microbiology, Faculty of Biology, University of Bielefeld, Bielefeld, Germany.
    van El, Carla G.
    Department of Clinical Genetics, Section Community Genetics, and Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.
    Forzano, Francesca
    Clinical Genetics Department, Guy’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London, UK.
    Goddijn, Mariëtte
    Center for Reproductive Medicine, Department of Obstetrics and Gynecology, Academic Medical Center, Amsterdam-Zuidoost, The Netherlands.
    Heindryckx, Björn
    Ghent-Fertility and Stem cell Team (G-FaST), Department for Reproductive Medicine, Ghent University Hospital, Ghent, Belgium.
    Howard, Heidi C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Radojkovic, Dragica
    Laboratory for Molecular Biology, Institute of Molecular Genetics and Genetic Engineering, University of Belgrade, Belgrade, Serbia.
    Rial-Sebbag, Emmanuelle
    University Paul Sabatier Toulouse, Toulouse, France.
    Tarlatzis, Basil C.
    1st Department of Obstetrics & Gynecology, School of Medicine, Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Cornel, Martina C.
    Department of Clinical Genetics, Section Community Genetics, and Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.
    Human germline gene editing: Recommendations of ESHG and ESHRE2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 4, p. 445-449Article in journal (Refereed)
    Abstract [en]

    Technological developments in gene editing raise high expectations for clinical applications, first of all for somatic gene editing but in theory also for germline gene editing (GLGE). GLGE is currently not allowed in many countries. This makes clinical applications in these countries impossible now, even if GLGE would become safe and effective. What were the arguments behind this legislation, and are they still convincing? If a technique can help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints? The European Society of Human Reproduction and Embryology (ESHRE) and the European Society of Human Genetics (ESHG) together developed a Background document and Recommendations to inform and stimulate ongoing societal debates. After consulting its membership and experts, this final version of the Recommendations was endorsed by the Executive Committee and the Board of the respective Societies in May 2017. Taking account of ethical arguments, we argue that both basic and pre-clinical research regarding GLGE can be justified, with conditions. Furthermore, while clinical GLGE would be totally premature, it might become a responsible intervention in the future, but only after adequate pre-clinical research. Safety of the child and future generations is a major concern. Future discussions must also address priorities among reproductive and potential non-reproductive alternatives, such as PGD and somatic editing, if that would be safe and successful. The prohibition of human germline modification, however, needs renewed discussion among relevant stakeholders, including the general public and legislators.

  • 45.
    Domeij, Helena
    et al.
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden.
    Fahlstrom, Gunilla
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden.
    Bertilsson, Goran
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden.
    Hultcrantz, Monica
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden; Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Munthe-Kaas, Heather
    Norwegian Inst Publ Hlth, Ctr Hlth Serv, Oslo, Norway.
    Nehlin Gordh, Christina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Helgesson, Gert
    Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data2018In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 60, no 8, p. 741-+Article, review/survey (Refereed)
    Abstract [en]

    Aim: To identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families.

    Method: A systematic literature search was conducted in six electronic databases: PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Scopus. Included studies were analysed using manifest content analysis. Methodological limitations and confidence in the evidence were assessed using a modified version of the Critical Appraisal Skills Programme and the Grading of Recommendations, Assessment, Development and Evaluation–Confidence in the Evidence from Reviews of Qualitative Research approach respectively.

    Results: Findings from 18 studies show that individuals with FASD experience a variation of disabilities, ranging from somatic problems, high pain tolerance, destructive behaviour, hyperactivity, and aggressiveness, to social problems with friendship, school attendance, and maintenance of steady employment. Most studies reported parents’ experiences with FASD; parenting was viewed as a lifelong engagement and that the whole family is isolated and burdened because of FASD. People with FASD feel that their difficulties affect their daily life in a limiting way and make them feel different from others.

    Interpretation: From the perspective of primarily parents, individuals with FASD and their parents face many different difficulties, for which they need societal support.

  • 46.
    Dondorp, Wybo
    et al.
    Maastricht Univ, Res Sch CAPHRI, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Res Sch GROW, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands..
    de Wert, Guido
    Maastricht Univ, Res Sch CAPHRI, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Res Sch GROW, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands..
    Bombard, Yvonne
    Univ Toronto, Fac Med, Li Ka Shing Knowledge Inst, St Michaels Hosp, Toronto, ON, Canada.;Univ Toronto, Fac Med, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada..
    Bianchi, Diana W.
    Tufts Univ, Sch Med, Dept Pediat Obstet & Gynecol, Boston, MA 02111 USA..
    Bergmann, Carsten
    Ctr Human Genet Biosci, Ingelheim, Germany.;Univ Freiburg, Med Ctr, Dept Med, D-79106 Freiburg, Germany..
    Borry, Pascal
    Leuven Univ, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Louvain, Belgium..
    Chitty, Lyn S.
    Great Ormond St Hosp & UCLH NHS Fdn Trusts, UCL Inst Child Hlth, Clin & Mol Genet Unit, London, England..
    Fellmann, Florence
    Univ Lausanne Hosp, Serv Med Genet, Lausanne, Switzerland..
    Forzano, Francesca
    Osped Galliera, Med Genet Unit, Genoa, Italy..
    Hall, Alison
    PHG Fdn, Cambridge, England..
    Henneman, Lidewij
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Howard, Heidi C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Lucassen, Anneke
    Univ Southampton, Dept Clin Eth & Law CELS, Southampton, Hants, England.;Wessex Clin Genet Serv, Southampton, Hants, England..
    Ormond, Kelly
    Stanford Univ, Sch Med, Dept Genet, Stanford, CA USA.;Stanford Univ, Sch Med, Stanford Ctr Biomed Eth, Stanford, CA USA..
    Peterlin, Borut
    Univ Ljubljana, Med Ctr, Clin Inst Med Genet, Ljubljana 61000, Slovenia..
    Radojkovic, Dragica
    Univ Belgrade, IMGGE, Lab Mol Biol, Belgrade, Serbia..
    Rogowski, Wolf
    Helmholtz Zentrum, Deutsch Forschungszentrum Gesundheit & Umwelt, Munich, Germany..
    Soller, Maria
    Lund Univ, Div Clin Genet, Lund, Sweden.;Univ Lund Hosp, Reg Labs Reg Skane, S-22185 Lund, Sweden..
    Tibben, Aad
    Leiden Univ, Med Ctr, Dept Clin Genet, Leiden, Netherlands..
    Tranebjaerg, Lisbeth
    Bispebjerg Hosp, Rigshosp, Dept Audiol, Copenhagen, Denmark.;Univ Copenhagen, Kennedy Ctr, Dept Clin Genet, Copenhagen, Denmark.;Univ Copenhagen, ICMM, Inst Cellular & Mol Med, Copenhagen, Denmark..
    van El, Carla G.
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Cornel, Martina C.
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening2015In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 23, no 11, p. 1438-1450Article in journal (Refereed)
    Abstract [en]

    This paper contains a joint ESHG/ASHG position document with recommendations regarding responsible innovation in prenatal screening with non-invasive prenatal testing (NIPT). By virtue of its greater accuracy and safety with respect to prenatal screening for common autosomal aneuploidies, NIPT has the potential of helping the practice better achieve its aim of facilitating autonomous reproductive choices, provided that balanced pretest information and non-directive counseling are available as part of the screening offer. Depending on the health-care setting, different scenarios for NIPT-based screening for common autosomal aneuploidies are possible. The trade-offs involved in these scenarios should be assessed in light of the aim of screening, the balance of benefits and burdens for pregnant women and their partners and considerations of cost-effectiveness and justice. With improving screening technologies and decreasing costs of sequencing and analysis, it will become possible in the near future to significantly expand the scope of prenatal screening beyond common autosomal aneuploidies. Commercial providers have already begun expanding their tests to include sex-chromosomal abnormalities and microdeletions. However, multiple false positives may undermine the main achievement of NIPT in the context of prenatal screening: the significant reduction of the invasive testing rate. This document argues for a cautious expansion of the scope of prenatal screening to serious congenital and childhood disorders, only following sound validation studies and a comprehensive evaluation of all relevant aspects. A further core message of this document is that in countries where prenatal screening is offered as a public health programme, governments and public health authorities should adopt an active role to ensure the responsible innovation of prenatal screening on the basis of ethical principles. Crucial elements are the quality of the screening process as a whole (including non-laboratory aspects such as information and counseling), education of professionals, systematic evaluation of all aspects of prenatal screening, development of better evaluation tools in the light of the aim of the practice, accountability to all stakeholders including children born from screened pregnancies and persons living with the conditions targeted in prenatal screening and promotion of equity of access.

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  • 47.
    Dreborg, Sten
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Redovisat forskningsfusk bara toppen av isberget?2013In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 110, no 37, p. 1584-1585Article in journal (Other academic)
  • 48.
    Drevin, Jennifer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nyholm, Dag
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Neurology.
    Widner, Håkan
    Skane Univ Hosp, Neurol Clin, S-22185 Lund, Sweden..
    Van Vliet, Trinette
    Skane Univ Hosp, Neurol Clin, S-22185 Lund, Sweden..
    Viberg Johansson, Jennifer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Inst Future Studies, Hollandargatan 13, S-11136 Stockholm, Sweden..
    Jiltsova, Elena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Neurology.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study2022In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, article id 102Article in journal (Refereed)
    Abstract [en]

    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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  • 49.
    Ehlert, Adam
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Severity and death2024In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633Article in journal (Refereed)
    Abstract [en]

    This article discusses the relationship between two theories about the badness of death, the Life-Comparative Account and the Gradualist Account, and two methods of operationalizing severity in health care priority setting, Absolute Shortfall and Proportional Shortfall. The aim is that theories about the badness of death can infuence and inform the idea of the basis of severity as a priority setting criterion. I argue that there are strong similarities between the Life-Comparative Account and Absolute Shortfall, and since the Life-Comparative Account is one of the most reasonable accounts of the badness of death, this provides some support for using Absolute Shortfall. I also argue that it is difcult to fnd support for Proportional Shortfall from theories about the badness of death, and also, that it is difcult to fnd support for Gradualist Account from theories about severity.

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  • 50.
    Ekstrand, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, International Maternal and Child Health (IMCH). Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Tyden, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Swedish parents’ interest in preconception genetic carrier screening2016In: Upsala Journal of Medical Sciences, ISSN 0300-9734, E-ISSN 2000-1967, Vol. 121, no 4, p. 289-294Article in journal (Refereed)
    Abstract [en]

    Introduction: Genetic technologies advance rapidly. It is possible to undergo genetic carrier screening before pregnancy to examine genetic risks to future offspring. We aimed to investigate parents’ interest and motives towards preconception genetic carrier screening (PCS) as well as factors associated with interest in PCS.

    Material and methods: Our study sample consists of 777 parent couples within the longitudinal Swedish Pregnancy Planning study. Women responded to questionnaires at three occasions: in early pregnancy, late pregnancy, and one year after childbirth. Male partners responded to one questionnaire one year after childbirth.

    Results: One-third of the parents were positive (30% versus 34% of women and men, respectively), less than a third were negative (26% versus 28%), and 45% versus 38% were uncertain about whether to consider PCS before a future pregnancy. No differences in PCS interest were found between women and men (P = 0.091), but a higher proportion of women were concerned about negative consequences (53% versus 46%, P < 0.003) and were ‘opposed to such a way of child selection’ (31.8% versus 25.2%,P = 0.002). Factors associated with PCS interest were experiences of prenatal diagnostics and positive attitudes towards finding out or choosing sex of one’s child (women), and prenatal diagnostics, self-rated poor health, and pregnancy planning (men).

    Conclusion: Both women and men had relatively high uncertainty towards PCS, but women were more concerned about negative consequences. The future extent of the clinical utility of PCS is currently unknown, but parents’ interests and doubts are important aspects to consider.

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