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  • 1.
    Mascalzoni, Deborah
    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. Eurac Res, Inst Biomed, Via Galvani 31, I-39100 Bolzano, Italy;Eurac Res, Inst Biomed, Balzano, Italy.
    Bentzen, Heidi Beate
    Univ Oslo, Norwegian Res Ctr Comp & Law, Dept Private Law, Fac Law, POB 6706, N-0130 Oslo, Norway;Univ Oslo, Ctr Med Eth, Oslo, Norway.
    Budin-Ljosne, Isabelle
    Norwegian Inst Publ Hlth, POB 222, N-0213 Oslo, Norway.
    Bygrave, Lee Andrew
    Univ Oslo, Norwegian Res Ctr Comp & Law, Dept Private Law, Fac Law, POB 6706, N-0130 Oslo, Norway.
    Bell, Jessica
    Univ Oslo, Norwegian Res Ctr Comp & Law, Dept Private Law, Fac Law, POB 6706, N-0130 Oslo, Norway;Univ Oxford, Oxford, England;Univ Melbourne, Melbourne, Vic, Australia;Univ Melbourne, Melbourne Law Sch, 185 Pelham St, Melbourne, Vic 3010, Australia.
    Dove, Edward S.
    Univ Edinburgh, Sch Law, LG 12,Old Coll,South Bridge, Edinburgh EH8 9YL, Midlothian, Scotland.
    Fuchsberger, Christian
    Eurac Res, Inst Biomed, Via Galvani 31, I-39100 Bolzano, Italy.
    Hveem, Kristian
    Norwegian Univ Sci & Technol, HUNT Res Ctr, Levanger, Norway;Norwegian Univ Sci & Technol, KG Jebsen Ctr Genet Epidemiol, Levanger, Norway;HUNT Res Ctr, Forskningsvegen 2, N-7600 Levanger, Norway.
    Mayrhofer, Michaela Th.
    BBMRI ERIC, Neue Stiftingtalstr 2-B-6, A-8010 Graz, Austria.
    Meraviglia, Viviana
    Eurac Res, Inst Biomed, Via Galvani 31, I-39100 Bolzano, Italy.
    O'Brien, David R.
    Harvard Univ, Boston, MA 02115 USA;Harvard Univ, Berkman Klein Ctr Internet & Soc, 23 Everett St,2nd Floor, Cambridge, MA 02138 USA.
    Pattaro, Cristian
    Eurac Res, Inst Biomed, Via Galvani 31, I-39100 Bolzano, Italy.
    Pramstaller, Peter P.
    Eurac Res, Inst Biomed, Via Galvani 31, I-39100 Bolzano, Italy.
    Rakic, Vojin
    Univ Belgrade, Ctr Study Bioeth, Inst Social Sci, Kraljice Natalije 45,POB 605, Belgrade 11000, Serbia.
    Rossini, Alessandra
    Eurac Res, Inst Biomed, Via Galvani 31, I-39100 Bolzano, Italy.
    Shabani, Mahsa
    Katholieke Univ Leuven, Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium;Univ Leuven, Ctr Biomed Eth & Law, Kapucijnenvoer 35, B-3000 Leuven, Belgium.
    Svantesson, Dan Jerker B.
    Bond Univ, Fac Law, Gold Coast, Qld 4229, Australia.
    Tomasi, Marta
    Univ Trento, Fac Law, Via Verdi 53, I-38100 Trento, Italy;Free Univ Bozen Bolzano, Bolzano, Italy.
    Ursin, Lars
    Norwegian Univ Sci & Technol, Trondheim, Norway;Norwegian Univ Sci & Technol, Dept Publ Hlth & Nursing, KG Jebsen Ctr Genet Epidemiol, Hakon Jarls Gate 11, N-7030 Trondheim, Norway.
    Wjst, Matthias
    Helmholtz Zentrum Munchen, Natl Res Ctr Environm Hlth, Inst Lung Biol & Dis, D-85764 Munich, Germany;Tech Univ Munich, Munich, Germany.
    Kaye, Jane
    Univ Oslo, Norwegian Res Ctr Comp & Law, Dept Private Law, Fac Law, POB 6706, N-0130 Oslo, Norway;Univ Oxford, Oxford, England;Univ Melbourne, Melbourne, Vic, Australia;Univ Oxford, Nuffield Dept Populat Hlth, HeLEX Ctr Hlth Law & Emerging Technol, Ewert House,Ewert Pl, Oxford OX2 7DD, England.
    Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?2019In: Annals of Internal Medicine, ISSN 0003-4819, E-ISSN 1539-3704, Vol. 170, no 5, p. 332-334Article in journal (Other academic)
  • 2.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    Authorship Order2019In: Learned Publishing, ISSN 0953-1513, E-ISSN 1741-4857, Vol. 32, no 2, p. 106-112Article in journal (Refereed)
    Abstract [en]

    Considering the fact that authorship order plays such a significant role as a basis for scientific merit, this paper looks into the practices of authorship order from a research ethical perspective. We conclude that there is a wide variety of practices and no common understanding of what the different authorship positions signify. Authorship guidelines do not provide much help. We recognize that, regardless of what system for valuing authorship positions is used, it will be misleading and unfair in most applications because relative contributions vary in ways that are not captured by fixed value assignments to authorship positions. In theory, assigning percentage figures reflecting the relative contributions of the authors would solve that problem, but we argue that such a scheme is not likely to work in practice. It can also be questioned whether relative, rather than absolute, contributions should be the basis for scientific merit. Contributorship is discussed as an alternative, but is recognized to be insufficient both in communicating absolute and relative contributions, as standardly used. However, there may be a way forward with contributorship, but then, the level of detail needs to increase considerably and its application be standardized.

  • 3.
    Stahl, Bernd Carsten
    et al.
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Akintoye, Simisola
    De Montfort Univ, Leicester De Montfort Law Sch, Leicester, Leics, England.
    Fothergill, Tyr
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Guerrero, Manuel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Karolinska Inst, Dept Neurobiol Care Sci & Soc, Div Neurogeriat, Solna, Sweden; Univ Chile, Dept Bioeth & Med Humanities, Santiago, Chile.
    Knight, Will
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Ulnicane, Inga
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Beyond Research Ethics: Dialogues in Neuro-ICT Research2019In: Frontiers in Human Neuroscience, ISSN 1662-5161, E-ISSN 1662-5161, Vol. 13, article id 105Article, review/survey (Refereed)
    Abstract [en]

    The increasing use of information and communication technologies (ICTs) to help facilitate neuroscience adds a new level of complexity to the question of how ethical issues of such research can be identified and addressed. Current research ethics practice, based on ethics reviews by institutional review boards (IRB) and underpinned by ethical principlism, has been widely criticized. In this article, we develop an alternative way of approaching ethics in neuro-ICT research, based on discourse ethics, which implements Responsible Research and Innovation (RRI) through dialogues. We draw on our work in Ethics Support, using the Human Brain Project (HBP) as empirical evidence of the viability of this approach.

  • 4.
    Matar, Amal
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Considering a Baby? Responsible Screening for the Future: Ethical and social implications for implementation and use of preconception expanded carrier screening in Sweden2019Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Preconception expanded carrier screening is a novel technology that involves the offer of a screening test for many recessive diseases (via an expanded screening panel) to prospective parents, with no priori risk. Test positive couples have a number of reproductive choices; prenatal diagnosis and aborting affected fetus, IVF and preimplantation genetic diagnosis, sperm or ovum donation or simply accept the risk. The test had been piloted in studies and can potentially be implemented in Europe. Therefore, it seemed pertinent to evaluate stakeholders’ perspectives on ethical and social implications of implementing and using preconception ECS in Sweden.

    Two main stakeholders were examined; healthcare professionals and health policymaking experts, via a mix of qualitative methods for data collection and data analysis. In Study I, we employed in-depth interviews to collect data and content analysis to analyze it. In Studies III and IV, expert interviews were used to gather data while thematic analysis was utilized to interpret it. Furthermore, in Study II, an ethical concept namely; reproductive autonomy, was critically discussed within a setting that expects a couple to make a conjoint reproductive decision about preconception ECS, while each partner still upholds his or her individual autonomy.

    The main findings of the empirical studies (Studies I, III and IV) echo to a great extent the prevailing ethical and social debates associated with the novel technology. Respondents expressed concerns with reproductive autonomy, medicalization, prioritization of health resources, discrimination and long term societal changes. Furthermore, respondents emphasized the importance to observe Swedish values, such as human dignity, equality and solidarity, when assessing a preconception ECS program. In addition, they described practicalities of implementation and political considerations that are pertinent to the Swedish context. Finally, some respondents recognized the advantages of reduced suffering and decrease in fetal anomalies and abortion as a consequence of preconception ECS.

    Study II, proposed a notion of couple autonomy, where certain demands if met, a couple’s reproductive decision can be accepted by healthcare staff as autonomous.

    The findings, in this thesis, steer towards non implementation of preconception ECS in its current status within the publicly-funded healthcare system in Sweden. This is because healthcare providers and experts were of the opinion that it would not solve a medical need, threaten Swedish values and use up resources extensively.

    List of papers
    1. Swedish healthcare providers' perceptions of preconception expanded carrier screening (ECS)—a qualitative study
    Open this publication in new window or tab >>Swedish healthcare providers' perceptions of preconception expanded carrier screening (ECS)—a qualitative study
    2016 (English)In: Journal of Community Genetics, ISSN 1868-6001, Vol. 7, no 3, p. 203-214Article in journal (Refereed) Published
    Abstract [en]

    Reproductive autonomy, medicalization, and discrimination against disabled and parental responsibility are the main ongoing ethical debates concerning reproductive genetic screening. To examine Swedish healthcare professionals’ views on preconception expanded carrier screening (ECS), a qualitative study involving academic and clinical institutions in Sweden was conducted in September 2014 to February 2015. Eleven healthcare professionals including clinicians, geneticists, a midwife, and a genetic counselor were interviewed in depth using a semi-structured interview guide. The questionnaire was constructed after reviewing the main literature and meetings with relevant healthcare providers. The interviews were recorded, transcribed verbatim, and content analyzed for categories and subcategories. Participants nurtured many ethical and non-ethical concerns regarding preconception ECS. Among the ethical concerns were the potential for discrimination, medicalization, concerns with prioritization of healthcare resources, and effects on reproductive freedom. The effects of implementation of preconception ECS, its stakeholders, regulations, and motivation are some of non-ethical concerns. These concerns, if not addressed, may affect the uptake and usage of carrier screening within Swedish healthcare system. As this is a qualitative study with a small non-random sample size, the findings cannot be generalized. The participants had little to no working experience with expanded screening panels. Moreover, the interviews were conducted in English, a second language for the participants, which might have limited the expression of their views. However, the authors claim that the findings may be pertinent to similar settings in other Scandinavian countries.

    Place, publisher, year, edition, pages
    Springer, 2016
    Keywords
    reproductiion, autonomy, expanded carrier screening
    National Category
    Obstetrics, Gynecology and Reproductive Medicine Public Health, Global Health, Social Medicine and Epidemiology
    Identifiers
    urn:nbn:se:uu:diva-294966 (URN)10.1007/s12687-016-0268-2 (DOI)000386778700004 ()27225888 (PubMedID)
    Available from: 2016-05-31 Created: 2016-05-31 Last updated: 2019-01-11Bibliographically approved
    2. Couple autonomy in preconception expanded carrier screening
    Open this publication in new window or tab >>Couple autonomy in preconception expanded carrier screening
    (English)Manuscript (preprint) (Other academic)
    Abstract [en]

    Background: Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they would enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. A further aim was to shed light on what occurs in reproductive clinics and to suggest concrete implications for the approach of healthcare professionals in those clinics. Discussion: Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions: A notion of couple autonomy can be fruitful for healthcare professionals by facilitating the ways in which close ones are vital for the decision-making concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.

    National Category
    Other Medical Biotechnology
    Identifiers
    urn:nbn:se:uu:diva-366363 (URN)
    Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2019-01-11Bibliographically approved
    3. “A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening
    Open this publication in new window or tab >>“A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening
    2018 (English)In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001Article in journal (Refereed) Published
    Abstract [en]

    To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization’s definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers’ perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.

    Place, publisher, year, edition, pages
    Springer, 2018
    Keywords
    Preconception Expanded carrier screening Genetic Policymakers Reproductive decision-making Ethics Social effects
    National Category
    Other Medical Biotechnology Other Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-362390 (URN)10.1007/s12687-018-0389-x (DOI)
    Available from: 2018-10-04 Created: 2018-10-04 Last updated: 2019-01-11Bibliographically approved
    4. Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study
    Open this publication in new window or tab >>Values and value conflicts in implementation and use of preconception expanded carrier screening: an expert interview study
    (English)Manuscript (preprint) (Other academic)
    Abstract [en]

    Background: Ethical values and principles have been incorporated in most aspects of healthcare, such as policy-making, communication, medical research and health technology assessment. Preconception expanded carrier screening is a genetic test offered to a general population or to couples with no known risk of recessive genetic diseases and planning a pregnancy. A test screens for carrier status of several autosomal recessive diseases simultaneously.

    Aim: To examine values and value conflicts experts recounted in implementation and use of preconception expanded carrier screening in Sweden. Methods: We interviewed ten experts, directly associated with influencing health policy- making in Sweden, and members of two non-governmental and three governmental organizations. We employed systematizing expert interviews to access experts’ specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, a legal expert, a theologian and a political party representative in the parliament. We used thematic analysis to identify themes and sub-themes in the data.

    Results: The main values that emerged were Respect for persons, Solidarity, Human dignity, Do no harm, Health, Love and Trust. Concepts relating to autonomy, integrity and privacy were the most commonly mentioned among the participants, followed by notions of equality, justice and social care. The experts’ descriptions of values were concordant to those in bioethical literature.

    Conclusions: Experts highlighted values that are distinctive of welfare states, as Sweden. Certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity.

    Keywords
    Moral values; intrinsic and extrinsic values; preconception expanded carrier screening; respect for persons; Solidarity; human dignity.
    National Category
    Other Medical Biotechnology
    Identifiers
    urn:nbn:se:uu:diva-366366 (URN)
    Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2019-01-11Bibliographically approved
  • 5.
    Grauman, Åsa
    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.
    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.
    James, Stefan K
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology.
    Veldwijk, Jorien
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment.2019In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this study was to explore research participants' (adults, age 50-65) perceptions of receiving cardiovascular risk information.

    METHODS: Five focus group interviews (N = 31) were performed with research participants aged 50-65 who participated in the Swedish CArdioPulmonary BioImage Study (SCAPIS). The interviews were analyzed using qualitative content analysis.

    RESULTS: The categories; the complexity of cardiovascular risk; insufficient presentation of test result; emotional responses; and health examinations provides confirmation, emerged. The test results were written in medical terms and lacked recommendations for further action which made it difficult for lay people to understand and use, and for some, also caused unnecessary worry.

    CONCLUSION: There was inadequate guidance concerning the implications of the test results, especially for participants without clinical findings. In order to allow research participants to obtain better cognitive and behavioral control, improvements are needed with regard to how personal risk information is communicated in research projects connected to health services.

    PRACTICAL IMPLICATIONS: The participants largely relied on physical signs when assessing their own cardiovascular risk. Health examinations are crucial for helping to add nuance to individuals' risk perceptions. For personal health information to have any real value for individuals, it must be designed from a user perspective.

  • 6.
    Witt, Stefanie
    et al.
    Univ Med Ctr Hamburg Eppendorf, Ctr Psychosocial Med, Dept Med Psychol, Hamburg, Germany.
    Escherich, Gabriele
    Univ Med Ctr Hamburg Eppendorf, Ctr Obstet & Pediat, Dept Pediat Hematol & Oncol, Hamburg, Germany.
    Rutkowski, Stefan
    Univ Med Ctr Hamburg Eppendorf, Ctr Obstet & Pediat, Dept Pediat Hematol & Oncol, Hamburg, Germany.
    Kappelhoff, Gerhard
    Univ Med Ctr Hamburg Eppendorf, Ctr Obstet & Pediat, Dept Pediat Hematol & Oncol, Hamburg, Germany.
    Frygner Holm, Sara
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Russ, Sandra
    Case Western Reserve Univ, Dept Psychol Sci, Cleveland, OH 44106 USA.
    Bullinger, Monika
    Univ Med Ctr Hamburg Eppendorf, Ctr Psychosocial Med, Dept Med Psychol, Hamburg, Germany.
    Quitmann, Julia
    Univ Med Ctr Hamburg Eppendorf, Ctr Psychosocial Med, Dept Med Psychol, Hamburg, Germany.
    Exploring the Potential of a Pretend Play Intervention in Young Patients With Leukemia2019In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 44, p. E98-E106Article in journal (Refereed)
    Abstract [en]

    Purpose: The aims of the study are 1) to gain knowledge of parents' and professionals' perceptions about cancer stricken children's resources, burdens, and ability to pretend play, and 2) to prepare the initiation of a pretend play intervention based on children's needs and included parents' and professionals' feedback.

    Design and Methods: Qualitative design using semi-structured interviews with 13 parents of children diagnosed with leukemia and 15 professionals in the field of pediatric oncology. Themes were derived with content analysis via deductive and inductive coding.

    Results: Analysis resulted in five topics. (1) Ability to play in the context of leukemia (2) ways of coping with leukemia (3) difficulty in transition to normality (4) parental quality of life and parents' needs (5) perceptions of the potential of pretend play.

    Conclusion: Study results indicate the potential of pretend play interventions for young cancer patients and the need for additional professional support of parents.

    Practice Implications: Pretend play is a tool children carry with them regardless of their circumstances. If we can enhance their ability to play, doing so should give them an advantage in creative problem solving and creative expression as they deal with a life threatening disease. 

  • 7.
    Veldwijk, Jorien
    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. Erasmus Univ, Erasmus Sch Hlth Policy & Management, POB 1738, NL-3000 DR Rotterdam, Netherlands;Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    Groothuis-Oudshoorn, Catharina G. M.
    Univ Twente, Hlth Technol & Serv Res, Enschede, Netherlands.
    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. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Dekker, Evelien
    Acad Med Ctr, Dept Gastroenterol & Hepatol, Amsterdam, Netherlands.
    Kallenberg, Frank G. J.
    Acad Med Ctr, Dept Gastroenterol & Hepatol, Amsterdam, Netherlands.
    de Wit, G. Ardine
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands;Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands.
    Lambooij, Mattijs S.
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    How psychological distance of a study sample in discrete choice experiments affects preference measurement: a colorectal cancer screening case study2019In: Patient Preference and Adherence, ISSN 1177-889X, E-ISSN 1177-889X, Vol. 13, p. 273-282Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of this study was to investigate to what extent the outcomes of a discrete choice experiment (DCE) differ based on respondents' psychological distance to the decision at hand. Methods: A DCE questionnaire regarding individuals' preferences for genetic screening for colorectal cancer (CRC) within the Dutch national CRC screening program was created. The DCE contained nine D-efficient designed choice tasks and was distributed among two populations that differ in their psychological distance to the decision at hand: 1) a representative sample of the Dutch general population aged 55-65 years, and 2) a sample of Dutch individuals who attended an information appointment regarding colonoscopies following the detection of blood in their stool sample in the CRC screening program. The DCE consisted of four attributes related to the decision whether to participate in genetic screening for CRC: 1) risk of being genetically predisposed, 2) risk of developing CRC, 3) frequency of follow-up colonoscopies, and 4) survival. Direct attribute ranking, dominant decision-making behavior, and relative importance scores (based on panel MIXL) were compared between the two populations. Attribute level estimates were compared with the Swait and Louviere test. Results: The proportion of respondents who both ranked survival as the most important attribute, and showed dominant decision-making behavior for this attribute, was significantly higher in the screened population compared to the general population. The relative importance scores of the attributes significantly differed between populations. Finally, the Swait and Louviere test also revealed significant differences in attribute level estimates in both the populations. Conclusion: The study outcomes differed between populations depending on their psychological distance to the decision. This study shows the importance of adequate sample selection; therefore, it is advocated to increase attention to study sample selection and reporting in DCE studies.

  • 8. Dal-Ré, Rafael
    et al.
    Avendaño-Solà, Cristina
    Bloechl-Daum, Brigitte
    de Boer, Anthonius
    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.
    Fuhr, Uwe
    Holm, Søren
    James, Stefan K
    Mentz, Robert J
    Perucca, Emilio
    Rosendaal, Frits R
    Treweek, Shaun
    Low risk pragmatic trials do not always require participants' informed consent.2019In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 364, article id l1092Article in journal (Refereed)
  • 9.
    Cornel, Martina C.
    et al.
    Vrije Univ Amsterdam, Amsterdam UMC, Clin Genet & Amsterdam Publ Hlth Res Inst, Sect Community Genet, Boelelaan 1117, 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.
    Lim, Daniel
    Kirkland & Ellis Int LLP, London, England.
    Bonham, Vence L.
    NHGRI, Social & Behav Res Branch, NIH, Bethesda, MD 20892 USA.
    Wartiovaara, Kirmo
    Univ Helsinki, Helsinki Univ Hosp, Clin Genet, Meilahdentie 2, Helsinki 00290, Finland.
    Moving towards a cure in genetics: what is needed to bring somatic gene therapy to the clinic?2019In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, no 3, p. 484-487Article in journal (Refereed)
    Abstract [en]

    Clinical trials using somatic gene editing (e.g., CRISPR-Cas9) have started in Europe and the United States and may provide safe and effective treatment and cure, not only for cancers but also for some monogenic conditions. In a workshop at the 2018 European Human Genetics Conference, the challenges of bringing somatic gene editing therapies to the clinic were discussed. The regulatory process needs to be considered early in the clinical development pathway to produce the data necessary to support the approval by the European Medicines Agency. The roles and responsibilities for geneticists may include counselling to explain the treatment possibilities and safety interpretation.

  • 10.
    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.

  • 11.
    Carrieri, Daniele
    et al.
    Univ Exeter, Egenis, Exeter, Devon, 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. Wellcome Genome Campus, Soc & Eth Res, Connecting Sci, Cambridge, England.
    Clarke, Angus J.
    Cardiff Univ, Sch Med, Cardiff, S Glam, Wales.
    Stefansdottir, Vigdis
    Landspitali Natl Univ Hosp Iceland, Dept Genet & Mol Med, Reykjavik, Iceland.
    Cornel, Martina C.
    Vrije Univ Amsterdam, Amsterdam Publ Hlth Res Inst, Sect Community Genet, Amsterdam UMC,Dept Clin Genet, Amsterdam, Netherlands.
    van El, Carla G.
    Vrije Univ Amsterdam, Amsterdam Publ Hlth Res Inst, Sect Community Genet, Amsterdam UMC,Dept Clin Genet, Amsterdam, Netherlands.
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, England.
    Reply to Bombard and Mighton2019In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, no 4, p. 507-508Article in journal (Other academic)
  • 12.
    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)
  • 13.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Bülow, William
    Department of Philosophy, Stockholm University, Stockholm, Sweden.
    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 E.
    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 University College.
    Should the deceased be listed as authors?2019In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, p. 1-8Article in journal (Refereed)
    Abstract [en]

    Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion.

  • 14.
    Salles, Arleen
    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.
    Bjaalie, Jan
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Fothergill, Tyr
    Guerrero, Manuel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Maslen, Hannah
    Muller, Jeffrey
    Prescott, Tony
    Stahl, Bernd
    Walter, Henrik
    Zilles, Karl
    Amunts, Katrin
    The Human Brain Project: Responsible Brain Research for the Benefit of Society2019In: Neuron, ISSN 0896-6273, E-ISSN 1097-4199, Vol. 101, no 3, p. 380-384Article, review/survey (Refereed)
  • 15.
    Russo, Selena
    et al.
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales, Kensington, New South Wales, Australia.
    Jongerius, Chiara
    Department of Medical Psychology—Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
    Faccio, Flavia
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hemato-oncology, University of Milan, Milan, Italy.
    Pizzoli, Silvia F.M.
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hemato-oncology, University of Milan, Milan, Italy.
    Pinto, Cathy Anne
    Department of Pharmacoepidemiology, Merck & Co, Inc, Kenilworth, NJ, USA.
    Veldwilk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus School of Health Policy and Management and Erasmus Choice Modelling Center, Erasmus University, Rotterdam, the Netherlands.
    Janssens, Rosanne
    Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium.
    Simons, Gewnda
    Rheumatology Research Group, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
    Falahee, Marie
    Rheumatology Research Group, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
    de Bekker-Grob, Esther
    Erasmus School of Health Policy and Management and Erasmus Choice Modelling Center, Erasmus University, Rotterdam, the Netherlands.
    Huys, Isabelle
    Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium.
    Postmus, Douwe
    University Medical Center Groningen, Groningen, the Netherlands.
    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.
    Pravettoni, Gabriella
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hemato-oncology, University of Milan, Milan, Italy.
    Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies2019In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 22, no 4, p. 491-501Article in journal (Refereed)
    Abstract [en]

    Background

    Research has been mainly focused on how to elicit patient preferences, with less attention on why patients form certain preferences.

    Objectives

    To assess which psychological instruments are currently used and which psychological constructs are known to have an impact on patients' preferences and health-related decisions including the formation of preferences and preference heterogeneity.

    Methods

    A systematic database search was undertaken to identify relevant studies. From the selected studies, the following information was extracted: study objectives, study population, design, psychological dimensions investigated, and instruments used to measure psychological variables.

    Results

    Thirty-three studies were identified that described the association between a psychological construct, measured using a validated instrument, and patients' preferences or health-related decisions. We identified 33 psychological instruments and 18 constructs, and categorized the instruments into 5 groups, namely, motivational factors, cognitive factors, individual differences, emotion and mood, and health beliefs.

    Conclusions

    This review provides an overview of the psychological factors and related instruments in the context of patients' preferences and decisions in healthcaresettings. Our results indicate that measures of health literacy, numeracy, and locus of control have an impact on health-related preferences and decisions. Within the category of constructs that could explain preference and decision heterogeneity, health locus of control is a strong predictor of decisions in several healthcare contexts and is useful to consider when designing a patient preference study. Future research should continue to explore the association of psychological constructs with preference formation and heterogeneity to build on these initial recommendations.

  • 16.
    Matar, Amal
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Hansson, M 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.
    “A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001Article in journal (Refereed)
    Abstract [en]

    To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization’s definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers’ perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.

  • 17.
    Samuel, Gabrielle
    et al.
    Kings Coll London, Dept Global Hlth & Social Med, London, 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.
    Cornel, Martina
    Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.
    van El, Carla
    Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.
    Hall, Alison
    PHG Fdn, 2 Worts Causeway, Cambridge CB1 8RN, England.
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, England.
    Prainsack, Barbara
    Kings Coll London, Dept Global Hlth & Social Med, London, England;Univ Vienna, Dept Polit Sci, Vienna, Austria.
    A response to the forensic genetics policy initiative's report "Establishing Best Practice for Forensic DNA Databases"2018In: Forensic Science International: Genetics, ISSN 1872-4973, E-ISSN 1878-0326, Vol. 36, p. E19-E21Article in journal (Other academic)
  • 18.
    Bjelobaba, Sonja
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Modern Languages. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University.
    Academic Integrity Skill Development amongst the Faculty at a Swedish University2018In: Towards Consistency and Transparency in Academic Integrity / [ed] Salim Razı, Irene Glendinning and Tomáš Foltýnek, Berlin: Peter Lang Publishing Group, 2018, p. 131-146Chapter in book (Refereed)
    Abstract [en]

    When we talk about the need for education in academic integrity, the implied recipient of such education is commonly students. This paper argues that to strengthen academic integrity, it is crucial to work with the faculty as well. Since 2014 a unit for pedagogical development at a Swedish university has conducted a project with the aim of enhancing knowledge of academic integrity. In 2014, a survey on academic integrity was sent out and the results were used to develop a new systematic holistic approach with several new measures to promote academic integrity. The aim of these measures regarding faculty was to strengthen faculty members' knowledge on academic integrity, to remind them of their duty to report cases of suspected misconduct, as well as to provide different tools and ideas to improve the academic integrity of their students. The undertaken measures have led to a noticeable increase in reported cases of plagiarism. In 2018, a follow-up survey was sent out. The present paper discusses this systematic approach to promote academic integrity, the measures taken, and the results of the surveys.

  • 19.
    Vears, Danya F.
    et al.
    Katholieke Univ Leuven, Dept Publ Hlth & Primary Care, Ctr Biomed Eth & Law, Kapucijnenvoer 35 Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, B-3000 Leuven, Belgium.
    Niemiec, Emilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Univ Bologna, Erasmus Mundus Joint Int Doctoral PhD Degree Prog, Via Galliera 3, I-40121 Bologna, Italy;Univ Turin, Dept Law, Lungo Dora Siena 100A, I-10153 Turin, Italy;Leibniz Univ Hannover, Ctr Eth & Law Life Sci, Klagesmarkt 14-17, D-30159 Hannover, Germany.
    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.
    Borry, Pascal
    Katholieke Univ Leuven, Dept Publ Hlth & Primary Care, Ctr Biomed Eth & Law, Kapucijnenvoer 35 Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, B-3000 Leuven, Belgium.
    Analysis of VUS reporting, variant reinterpretation and recontact policies in clinical genomic sequencing consent forms2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 12, p. 1743-1751Article in journal (Refereed)
    Abstract [en]

    There are several key unsolved issues relating to the clinical use of next generation sequencing, such as: should laboratories report variants of uncertain significance (VUS) to clinicians and/or patients ? Should they reinterpret VUS in response to growing knowledge in the field ? And should patients be recontacted regarding such results ? We systematically analyzed 58 consent forms in English used in the diagnostic context to investigate their policies for (a) reporting VUS, (b) reinterpreting variants, including who should initiate this, and (c) recontacting patients and the mechanisms for undertaking any recontact. One-third (20/58) of the forms did not mention VUS in any way. Of the 38 forms that mentioned VUS, only half provided some description of what a VUS is. Approximately one-third of forms explicitly stated that reinterpretation of variants for clinical purposes may occur. Less than half mentioned recontact for clinical purposes, with variation as to whether laboratories, patients, or clinicians should initiate this. We suggest that the variability in variant reporting, reinterpretation, and recontact policies and practices revealed by our analysis may lead to diffused responsibility, which could result in missed opportunities for patients or family members to receive a diagnosis in response to updated variant classifications. Finally, we provide some suggestions for ethically appropriate inclusion of policies for reporting VUS, reinterpretation, and recontact on consent forms.

  • 20. Middleton, Anna
    et al.
    Milne, Richard
    Thorogood, Adrian
    Kleiderman, Erika
    Niemiec, Emilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Prainsack, Barbara
    Farley, Lauren
    Bevan, Paul
    Steed, Claire
    Smith, James
    Vears, Danya
    Atutornu, Jerome
    Howard, Heidi C
    Morley, Katherine I
    Attitudes of publics who are unwilling to donate DNA data for research.2018In: European Journal of Medical Genetics, ISSN 1769-7212, E-ISSN 1878-0849, article id S1769-7212(18)30731-6Article in journal (Refereed)
    Abstract [en]

    With the use of genetic technology, researchers have the potential to inform medical diagnoses and treatment in actionable ways. Accurate variant interpretation is a necessary condition for the utility of genetic technology to unfold. This relies on the ability to access large genomic datasets so that comparisons can be made between variants of interest. This can only be successful if DNA and medical data are donated by large numbers of people to 'research', including clinical, non-profit and for-profit research initiatives, in order to be accessed by scientists and clinicians worldwide. The objective of the 'Your DNA, Your Say' global survey is to explore public attitudes, values and opinions towards willingness to donate and concerns regarding the donation of one's personal data for use by others. Using a representative sample of 8967 English-speaking publics from the UK, the USA, Canada and Australia, we explore the characteristics of people who are unwilling (n = 1426) to donate their DNA and medical information, together with an exploration of their reasons. Understanding this perspective is important for making sense of the interaction between science and society. It also helps to focus engagement initiatives on the issues of concern to some publics.

  • 21.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Lund Univ, Fac Law, Lund, Sweden; Riga Stradins Univ, Fac Law, Riga, Latvia.
    Biobanking between the EU and Third Countries - Can Data Sharing Be Facilitated via Soft Regulatory Tools?2018In: European Journal of Health Law, ISSN 0929-0273, E-ISSN 1571-8093, Vol. 25, no 5, p. 517-536Article in journal (Refereed)
    Abstract [en]

    In biobanking, collaboration and data sharing contribute to building genomic research capacity, and have the potential to further scientific advances that ultimately can result in advances in clinical care. However, in the absence of common applicable legal frameworks that enable collaboration, capacity building is hindered. With the applicability of the General Data Protection Regulation, the obstacles to data sharing which involve export of data from European Union Member States to third countries are expected to grow, rendering the collaboration between the EU and third countries even more challenging. This article examines how, if at all, data sharing in biobank research between the EU and third countries could be facilitated via the use of soft regulatory tools. It argues that although the existing soft tools might not in itself be suitable for meeting all the GDPR requirements, they could be the basis on which to raise the area-specific data protection bar globally.

  • 22.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Book review - T.K. Hervey, C.A. Young and L.E. Bishop (eds.) Research Handbook on EU Health Law and Policy (Cheltenham: Edward Elgar Publishing, 2017), ISBN 978-1785364716, 592 pp.2018In: European Journal of Health Law, ISSN 0929-0273, E-ISSN 1571-8093, Vol. 25, no 3, p. 355-360Article, book review (Other academic)
  • 23.
    Whichello, Chiara
    et al.
    Erasmus Univ, Rotterdam, Netherlands.
    Soekhai, Vikas
    Erasmus Univ, Rotterdam, Netherlands.
    Levitan, Bennett
    Janssen R&D, Titusville, NJ USA.
    Veldwijk, Jorien
    Erasmus Univ, Rotterdam, Netherlands.
    Hammad, Tarek
    EMD Serono Res & Dev, Billerica, MA USA.
    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.
    van Overbeeke, Eline
    Katholieke Univ Leuven, Leuven, Belgium.
    Russo, Selena
    European Inst Oncol, Milan, Italy.
    Mohammed, Ateesha
    Bayer, Whippany, NJ USA.
    Hermann, Richard
    AstraZeneca, Wilmington, DE USA.
    Huys, Isabelle
    Katholieke Univ Leuven, Leuven, Belgium.
    Patadia, Vaishali
    Sanofi, Bridgewater, NJ USA.
    Juhaeri, Juhaeri
    Sanofi, Bridgewater, NJ USA.
    de Bekker-Grob, Esther
    Erasmus Univ, Rotterdam, Netherlands.
    Compendium of methods for measuring patient preferences in medical treatment2018In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 517-518, article id 1135Article in journal (Other academic)
  • 24.
    Pettersson, Mona
    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 Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    COMPETENCE AND COMMUNICATION: Do Not Resuscitate Decisions in Cancer Care2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Within cancer care, do not resuscitate (DNR) decisions are frequently made. DNR decisions can be ethically difficult and lead to conflicts of interest and disagreements within the medical team. This thesis brings together empirical knowledge of DNR decisions in cancer care and theoretical discussions on the ethical aspects and the competence needed to make such decisions.

    The overall aim of this project was to investigate the clinical and ethical aspects of DNR decisions from the perspectives of nurses and physicians working in hematology and oncology care. The methods used were qualitative, with individual interviews, and quantitative, using a web survey. Ethical theories, principles and models were used   in the planning of the studies and to explain and discuss the results.

    Fifteen nurses in Study I expressed a close relationship with their patients. They expressed how they needed clear and well-documented decisions on DNR to provide good care to patient and relatives. Sixteen physicians participated in Study II. They described how they made decisions on DNR mainly on medical grounds, but reflected on ethical aspects of the decision, weighing maleficence and beneficence.  In Study III, the interviews from Study I and II were analyzed from the perspective of ethical competence. The results showed that physicians and nurses were able to reflect on their ethical competence in relation to DNR decisions and described ethical competence as both being good and doing right. Also knowledge in ethics was emphasized.  In Study IV, 216 nurses and physicians participated. Most respondents thought it was important for patients and relatives to participate in, and be informed about, a DNR decision, but fewer thought that this was likely to happen. Nurses rated the importance higher than physicians did. The most important attributes in relation to DNR decisions for both nurses and physicians pertained more to medical viewpoints than to ethical values.

    DNR decisions in cancer care can be associated with ethical conflicts of interest, and nurses and physicians have different perspective of DNR decisions which they need to share. Competence in ethics and inter-professional communication are crucial for nurses and physicians participating in such decisions.

    List of papers
    1. Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care
    Open this publication in new window or tab >>Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care
    2014 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 21, no 8, p. 902-915Article in journal (Refereed) Published
    Abstract [en]

    Background: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce.

    Objective: The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions.

    Research design: A qualitative, descriptive methodology with individual semi-structured interviews was used.

    Participants and research context: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually.

    Ethical considerations: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration.

    Findings: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties.

    Conclusion: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-239297 (URN)10.1177/0969733014533238 (DOI)
    Available from: 2014-12-22 Created: 2014-12-22 Last updated: 2018-10-03
    2. “Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.
    Open this publication in new window or tab >>“Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.
    (English)Manuscript (preprint) (Other academic)
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-361756 (URN)
    Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2018-10-03
    3. Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
    Open this publication in new window or tab >>Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
    2018 (English)In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 63Article in journal (Refereed) Published
    Abstract [en]

    Background

    DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.

    Methods

    Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.

    Results

    Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.

    Conclusions

    In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

    Keywords
    Ethical competence; DNR decisions; Oncology; Hematology; Nurses; Physicians
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-355087 (URN)10.1186/s12910-018-0300-7 (DOI)000435613900002 ()29914440 (PubMedID)
    Funder
    Swedish Cancer Society
    Available from: 2018-06-26 Created: 2018-06-26 Last updated: 2018-10-03Bibliographically approved
    4. Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology
    Open this publication in new window or tab >>Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology
    2018 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 11, article id e0206550Article in journal (Refereed) Published
    Abstract [en]

    Introduction

    In cancer care, do-not-resuscitate (DNR) decisions are made frequently; i.e., decisions not to start the heart in the event of a cardiac arrest. A DNR decision can be a complex process involving nurses and physicians with a wide variety of experiences and perspectives. Previous studies have shown different perceptions of the DNR decision process among nurses and physicians, e.g. concerning patient involvement and information. DNR decisions have also been reported to be unclear and documentation inconsistent.

    Objective

    The aim was to investigate how important and how likely to happen nurses and physicians considered various aspects of the DNR decision process, regarding participation, information and documentation, as well as which attributes they found most important in relation to DNR decisions.

    Methods

    A descriptive correlational study using a web survey was conducted, including 132 nurses and 84 physicians working in hematology and oncology.

    Results

    Almost half of the respondents reported it not likely that the patient would be involved in the decision on DNR, and 21% found it unimportant to inform patients of the DNR decision. Further, 57% reported that providing information to the patient was important, but only 21% stated that this was likely to happen. There were differences between nurses and physicians, especially regarding participation by and information to patients and relatives. The attributes deemed most important for both nurses and physicians pertained more to medical viewpoints than to ethical values, but a difference was found, as nurses chose patient autonomy as the most important value, while physicians rated non-maleficence as the most important value in relation to DNR decisions.

    Conclusion

    Nurses and physicians need to be able to talk openly about their different perspectives on DNR decisions, so that they can develop a deeper understanding of the decisions, especially in cases where they disagree. They should also be aware that what they think is important is not always likely to happen. The organization needs to support such discussions through providing an environment that allows ethical discussions on regular basis. Patients and relatives will also benefit from receiving the same information from all caregivers.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-361787 (URN)10.1371/journal.pone.0206550 (DOI)000451054800020 ()30462673 (PubMedID)
    Note

    Contributed equally to this work: Mona Pettersson, Anna T. Höglund, Mariann Hedström

    Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2019-01-18Bibliographically approved
  • 25.
    Farisco, Michele
    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. Science and Society Unit, Biogem, Biology and Molecular Genetics Institute, Ariano Irpino, Italy.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Changeux, Jean-Pierre
    Drug addiction: from neuroscience to ethics2018In: Frontiers in Psychiatry, ISSN 1664-0640, E-ISSN 1664-0640, Vol. 9, article id 595Article in journal (Refereed)
    Abstract [en]

    In the present paper we suggest a potential new ethical analysis of addiction focusing on the relationship between aware and unaware processings in the brain, i.e. on what is consciously and what is non-consciously perceived by the individual. We take the case of the opioids epidemics to argue that a consideration of both aware and unaware processings provides a more comprehensive ethical framework to discuss the ethical issues raised by addiction.Finally, our hypothesis is that in addition to identified Central Nervous System’s neuronal/neurochemical factors contributing to addictive dynamics, the socio-economic status, i.e. the individual background, plays a causal role through epigenetic processes, originating the need for additional reward in the brain. This provides a strong base for a socio-political form of responsibility for preventing and managing addiction crisis.

  • 26. Malmqvist, Erik
    et al.
    Furberg, Elisabeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sandman, Lars
    Ethical aspects of medical age assessment in the asylum process: a Swedish perspective2018In: International journal of legal medicine (Print), ISSN 0937-9827, E-ISSN 1437-1596, Vol. 132, no 3, p. 815-823Article in journal (Refereed)
    Abstract [en]

    According to European regulations and the legisla-tions of individual member states, children who seek asylum have a different set of rights than adults in a similar position.To protect these rights and ensure rule of law, migration authorities are commonly required to assess the age of asylum seekers who lack reliable documentation, including throug hvarious medical methods. However, many healthcare professionals and other commentators consider medical age assessment to be ethically problematic. This paper presents a simplified and amended account of the main findings of a recent ethical analysis of medical age assessment in the asylum process commissioned by the Swedish National Board of Healthand Welfare. A number of ethical challenges related to conflicting goals, equality and fairness, autonomy and informed consent, privacy and integrity, and professional values and roles are identified and analysed. It is concluded that most of these challenges can be met, but that this requires a system where the assessment is sufficiently accurate and where adequate safeguards are in place. Two important ethical questions are found to warrant further analysis. The first is whether asylum seekers’consent to the procedure can be considered genuinely voluntary. The second is whether and how medica lage assessments could affect negative public attitudes towards asylum seekers or discriminatory societal views more generally.

  • 27.
    Pettersson, Mona
    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. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 63Article in journal (Refereed)
    Abstract [en]

    Background

    DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.

    Methods

    Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.

    Results

    Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.

    Conclusions

    In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

  • 28.
    Skogeland, Ulrika
    et al.
    Stockholm CF Center Karolinska University Hospital, Stockholm, Sweden.
    de Monestrol, Isabelle
    Stockholm CF Center Karolinska University Hospital, Stockholm, Sweden.
    Godskesen, Tove E.
    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 University College Stockholm, Sweden,.
    Experiences of Individuals Awaiting Lung Transplantation2018In: Respiratory care, ISSN 0020-1324, E-ISSN 1943-3654, Vol. 63, no 12, p. 1535-1540Article in journal (Refereed)
    Abstract [en]

    Lung transplantation is an established intervention for patients with advanced and life-threateningrespiratory disease. Unfortunately, the shortage of organ donors results in a need for organs thatgreatly exceeds availability. This narrative review aimed to investigate the experiences of patientswith respiratory diseases who wait for lung transplantation. Articles were retrieved from medicalliterature databases. Thirteen qualitative studies were reviewed, one of them used a mixed method.We found that individuals faced varied and complex situations differently while waiting for lung transplantations,depending on physical, psychological, social, and existential factors. Waiting gives hope fora future without the limitations imposed by the disease but also causes great stress. Many individualsstruggled with the existential guilt associated with the privilege of having access to transplantation. Thisreview highlighted that support from health-care professionals, next of kin, patients who had previouslyreceived a transplantation, and close friends have a vital role to play for individuals waiting for a lungtransplantation.

  • 29.
    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. Uppsala University.
    Filosofía de las Neurociencias.: Cerebro, mente, persona2018Book (Other academic)
    Abstract [es]

    Michele Farisco presenta los desafíos que las neurociencias plantean al saber filosófico, sobre todo en el dominio ético-antropológico. El neurocientífico no permanece circunscripto a un ámbito disciplinar sino que intenta acercarse e indagar, con métodos y finalidades relativamente diversas, el sistema nervioso del hombre, llegando, en algunas casos, a elaborar una visión absolutamente biologicista de la naturaleza humana. Esta visión se ha visto potenciada por la posibilidad de visualizar el funcionamiento del cerebro gracias a las técnicas del neuroimaging. Farisco, luego de señalar las limitaciones instrumentales y conceptuales de las técnicas del neuroimaging, advierte al lector acerca de dos posibles errores: la denominada “falacia mereológica”, que consiste en atribuir al cerebro todas las actividades mentales, considerando la parte como un todo, y el error de confundir antecedentes y consecuentes, fundamentando por qué el hombre no es un sí neuroquímico (brainhood) cuyo ser se identifica con el cerebro. Farisco, con total justeza, señala que en esta posición antropológica reductiva, la ideología prevalece sobre la ciencia por cuanto formula afirmaciones que escapan totalmente al dominio de las neurociencias en particular, y de la ciencia en general.

  • 30.
    Höglund, Anna
    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.
    Carlsson, Marianne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Holmström, Inger
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Lännerström, Linda
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning i Sörmland (CKFD).
    Kaminsky, Elenor
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    From denial to awareness: a conceptual model for obtaining equity in healthcare2018In: International Journal for Equity in Health, ISSN 1475-9276, E-ISSN 1475-9276, Vol. 17, no 9Article in journal (Refereed)
  • 31. Renzi, Chiara
    et al.
    Provencal, Nadine
    Bassil, Katherine C
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Radford, Elizabeth J
    Koupil, Ilona
    Mueller-Myhsok, Bertram
    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.
    Rutten, Bart P F
    From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.2018In: Progress in Molecular Biology and Translational Science, ISSN 1877-1173, E-ISSN 1878-0814, Vol. 158, p. 299-323Article, review/survey (Refereed)
    Abstract [en]

    The development of mental disorders constitutes a complex phenomenon driven by unique social, psychological and biological factors such as genetics and epigenetics, throughout an individual's life course. Both environmental and genetic factors have an impact on mental health phenotypes and act simultaneously to induce changes in brain and behavior. Here, we describe and critically evaluate the current literature on gene-environment interactions and epigenetics on mental health by highlighting recent human and animal studies. We furthermore review some of the main ethical and social implications concerning gene-environment interactions and epigenetics and provide explanations and suggestions on how to move from statistical and epigenetic associations to biological and psychological explanations within a multi-disciplinary and integrative approach of understanding mental health.

  • 32.
    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.
    Genetic risk and value2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 222-235Article in journal (Refereed)
    Abstract [en]

    A conceptual truth about risks is that they involve a possible and future adverse effect or a negative value of some kind. The genetic risks that individuals may face in the health care setting differ in some crucial respects to other kind of risks. The aims of this paper are to analyse the notion of value in the context of genetic risk in the setting of health care, and to suggest a conception of the evaluative aspect of genetic risk that is fruitful for genetic risk information. Two influential and relevant approaches to value, preferentialism and the capability approach, are discussed in the light of certain distinctive features of genetic risk and a third, a sensibility theory of value is suggested. According to this view, the concept of risk is a so-called ‘thick’ evaluative concept that has both a world-guiding function as well as an action-guiding or normative function. It is argued that this provides a more promising way to think about genetic risks in the clinical setting.

  • 33.
    Hansson, Mats G.
    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. ..
    Bouder, Frederic
    Dept Technol & Soc Studies, Maastricht.
    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.
    Genetics and risk - an exploration of conceptual approaches to genetic risk2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 101-108Article in journal (Other academic)
  • 34.
    de Bekker-Grob, Esther W.
    et al.
    Erasmus School of Health Policy & Management and Erasmus Choice Modelling Centre, Erasmus University Rotterdam, the Netherlands.
    Juhaeri, Juhaeri
    Sanofi Aventis Recherche & Développement, SARD, Chilly Mazarin, France.
    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.
    Levitan, Bennett
    Janssen R&D LLC, Titusville, NJ, USA.
    Giving patients' preferences a voice in the medical product lifecycle: why, when and how?: The public-private PREFER project: Work package 22018In: ISPOR Value & Outcomes Spotlight, ISSN 2375-866X, Vol. 4, no 3, p. 19-21Article in journal (Other academic)
  • 35.
    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.
    God vård innebär att sällsynta sjukdomar ges resurser2018In: Dagens MedicinArticle in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Sverige behöver ta ett nationellt ansvar så att människor med sällsynta diagnoser också kan få ta del av forskning och nya läkemedel.

  • 36.
    Vears, D. F.
    et al.
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Kapucijnenvoer 35,Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium.
    Niemiec, Emilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Univ Bologna, Erasmus Mundus Joint Int Doctoral PhD Degree Prog, Bologna, Italy;Univ Turin, Dept Law, Turin, Italy;Leibniz Univ Hannover, Cte Eth & Law Life Sci, Hannover, Germany.
    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.
    Borry, P.
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Kapucijnenvoer 35,Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium.
    How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings?: A content analysis2018In: Clinical Genetics, ISSN 0009-9163, E-ISSN 1399-0004, Vol. 94, no 3-4, p. 321-329Article in journal (Refereed)
    Abstract [en]

    Whole exome and whole genome sequencing are increasingly being offered to patients in the clinical setting. Yet, the question of whether, and to what extent, unsolicited findings (UF) and/or secondary findings (SF) should be returned to patients remains open and little is known about how diagnostic consent forms address this issue. We systematically identified consent forms for diagnostic genomic sequencing online and used inductive content analysis to determine if and how they discuss reporting of UF and SF, and whether patients are given options regarding the return of these results. Fifty-four forms representing 38 laboratories/clinics were analyzed. A quarter of the forms did not mention UF or SF. Forms used a variety of terms to discuss UF and SF, sometimes using these interchangeably or incorrectly. Reporting policies for UF varied: 5 forms stated that UF will not be returned, 15 indicated UF may be returned, and 28 did not specify their policy. One-third indicated their laboratory returns SF. Addressing inconsistent terminology and providing sufficient information about UF/SF in consent forms will increase patient understanding and help ensure adequate informed consent.

  • 37.
    Eriksson, Stefan
    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.
    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 Högskola.
    Andersson, Lars
    Ersta Sköndal Bräcke Högskola.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    How to counter undeserving authorship2018In: Insights: the UKSG journal, E-ISSN 2048-7754, Vol. 31, no 1, p. 1-6Article in journal (Refereed)
    Abstract [en]

    The average number of authors listed on contributions to scientific journals has increased considerably over time. While this may be accounted for by the increased complexity of much research and a corresponding need for extended collaboration, several studies suggest that the prevalence of non-deserving authors on research papers is alarming. In this paper a combined qualitative and quantitative approach is suggested to reduce the number of undeserving authors on academic papers: 1) ask scholars who apply for positions to explain the basics of a random selection of their co-authored papers, and 2) in bibliometric measurements, divide publications and citations by the number of authors.

  • 38.
    Howard, Heidi Carmen
    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.
    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.
    Mabile, Laurence
    Houeland, Gry
    Rial-Sebbag, Emmanuelle
    Cambon-Thomsen, Anne
    How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 169-176Article in journal (Refereed)
    Abstract [en]

    Currently, a great deal of biomedical research in fields such as epidemiology, clinical trials and genetics is reliant on vast amounts of biological and phenotypic information collected and assembled in biobanks. While many resources are being invested to ensure that comprehensive and well-organised biobanks are able to provide increased access to, and sharing of biomedical samples and information, many barriers and challenges remain to such responsible and extensive sharing. Germane to the discussion herein is the barrier to collecting and sharing bioresources related to the lack of proper recognition of researchers and clinicians who developed the bioresource. Indeed, the efforts and resources invested to set up and sustain a bioresource can be enormous and such work should be easily traced and properly recognised. However, there is currently no such system that systematically and accurately traces and attributes recognition to those doing this work or the bioresource institution itself. As a beginning of a solution to the "recognition problem", the Bioresource Research Impact Factor/Framework (BRIF) initiative was proposed almost a decade and a half ago and is currently under further development. With the ultimate aim of increasing awareness and understanding of the BRIF, in this article, we contribute the following: (1) a review of the objectives and functions of the BRIF including the description of two tools that will help in the deployment of the BRIF, the CoBRA (Citation of BioResources in journal Articles) guideline, and the Open Journal of Bioresources (OJB); (2) the results of a small empirical study on stakeholder awareness of the BRIF and (3) a brief analysis of the ethical dimensions of the BRIF which allow it to be a positive contribution to responsible biobanking.

  • 39.
    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.

  • 40.
    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.
    INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question.

    The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participants’ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participants’ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information.

    As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of people’s attitudes and preferences need to explicitly engage the complexity of genetic incidental findings.

    List of papers
    1. Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
    Open this publication in new window or tab >>Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
    2015 (English)In: Ethics, Law and Governance of Biobanking: National, European and International Approaches / [ed] Mascalzoni, Deborah, Springer, 2015Chapter in book (Refereed)
    Place, publisher, year, edition, pages
    Springer, 2015
    Series
    International Library of Ethics Law and Technology, ISSN 1875-0044 ; 14
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-244975 (URN)9789401795739 (ISBN)
    Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2018-08-01Bibliographically approved
    2. Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
    Open this publication in new window or tab >>Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
    2016 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, no 3, p. 203-209Article in journal (Refereed) Published
    Abstract [en]

    Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic.

    In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice.

    Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-244971 (URN)10.1111/bioe.12160 (DOI)000371487500010 ()
    Funder
    Riksbankens Jubileumsfond, PR2013-0123EU, FP7, Seventh Framework Programme, 305444Swedish Research CouncilSwedish Heart Lung Foundation
    Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2018-08-01Bibliographically approved
    3. Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
    Open this publication in new window or tab >>Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
    Show others...
    2018 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 3, p. 422-427Article in journal (Refereed) Published
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

    Keywords
    Lay understanding; Conception of genetic risk; Making sense of genetic risk in research; Genetic risk communication
    National Category
    Medical Genetics
    Identifiers
    urn:nbn:se:uu:diva-330221 (URN)10.1016/j.pec.2017.09.009 (DOI)000427826300007 ()
    Available from: 2017-09-27 Created: 2017-09-27 Last updated: 2018-08-01Bibliographically approved
    4. Research participants’ preferences for receiving incidental genetic risk information: a discrete choice experiment
    Open this publication in new window or tab >>Research participants’ preferences for receiving incidental genetic risk information: a discrete choice experiment
    Show others...
    (English)In: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366Article in journal (Refereed) Submitted
    National Category
    Public Health, Global Health, Social Medicine and Epidemiology Other Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-356552 (URN)
    Available from: 2018-08-01 Created: 2018-08-01 Last updated: 2018-08-01
  • 41.
    Farisco, Michele
    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. Science and Society Unit, Biogem Genetic Research Centre, Ariano Irpino (AV), Italy.
    Hellgren Kotaleski, Jeanette
    Science for Life Laboratory, School of Computer Science and Communication, KTH Royal Institute of Technology, Stockholm, Sweden; Department of Neuroscience, Karolinska Institute, Solna, Sweden.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Large-scale brain simulation and disorders of consciousness: Mapping technical and conceptual issues2018In: Frontiers in Psychology, ISSN 1664-1078, E-ISSN 1664-1078, Vol. 9, article id 585Article in journal (Refereed)
    Abstract [en]

    Modelling and simulations have gained a leading position in contemporary attempts to describe, explain, and quantitatively predict the human brain's operations. Computer models are highly sophisticated tools developed to achieve an integrated knowledge of the brain with the aim of overcoming the actual fragmentation resulting from different neuroscientific approaches. In this paper we investigate plausibility of simulation technologies for emulation of consciousness and the potential clinical impact of large-scale brain simulation on the assessment and care of disorders of consciousness (DOCs), e.g. Coma, Vegetative State/Unresponsive Wakefulness Syndrome, Minimally Conscious State.Notwithstanding their technical limitations, we suggest that simulation technologies may offer new solutions to old practical problems, particularly in clinical contexts. We take DOCs as an illustrative case, arguing that the simulation of neural correlates of consciousness is potentially useful for improving treatments of patients with DOCs.

  • 42.
    Klingström, Tomas
    et al.
    SLU-Global Bioinformatics Centre, Department of Animal Breeding and Genetics, Swedish University of Agricultural Sciences, Sweden..
    Bongcam Rudloff, Erik
    SLU-Global Bioinformatics Centre, Department of Animal Breeding and Genetics, Swedish University of Agricultural Sciences, Sweden..
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Legal & ethical compliance when sharing biospecimen2018In: Briefings in Functional Genomics & Proteomics, ISSN 2041-2649, E-ISSN 2041-2657, Vol. 17, no 1, p. 1-7Article, review/survey (Refereed)
    Abstract [en]

    When obtaining samples from biobanks, resolving ethical and legal concerns is a time-consuming task where researchers need to balance the needs of privacy, trust and scientific progress. The Biobanking and Biomolecular Resources Research Infrastructure-large Prospective Cohorts project has resolved numerous such issues through intense ommunication between involved researchers and experts in its mission to unite large  rospective study sets in Europe. To facilitate efficient communication, it is useful for onexperts to have an at least basic understanding of the regulatory systemformanaging biological samples. Laws regulating research oversight are based on national law and normally share core principles founded on international charters. In interview studies among donors, chief concerns are privacy, efficient sample utilization and access to information generated fromtheir samples. Despite a lack of clear evidence regarding which concern takes precedence, scientific as well as public discourse has largely focused on privacy concerns and the right of donors to control the usage of their samples. It is therefore important to  roactively deal with ethical and legal issues to avoid complications that delay or prevent samples from being accessed. To help biobank professionals avoid making unnecessary mistakes, we have developed this basic primer covering the relationship between ethics and law, the concept of informed consent and considerations for returning findings to donors.

  • 43. Piciocchi, Cinzia
    et al.
    Ducato, Rossana
    Martinelli, Lucia
    Perra, Silvia
    Tomasi, Marta
    Zuddas, Carla
    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.
    Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 177-190Article in journal (Refereed)
    Abstract [en]

    This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance of genetic resources in the context of genetic biobanks in Italy is discussed, as an example of the stratification of different inputs and rules: EU law, national law, orders made by authorities and soft law, which need to be integrated with ethical principles, technological strategies and solutions. After providing an overview of the Italian legal regulation of genetic data processing, it considers the fate of genetic material and IP rights in the event of a biobank's insolvency. To this end, it analyses two case studies: a controversial bankruptcy case which occurred in Sardinia, one of the first examples of private and public partnership biobanks. Another case study considered is the Chris project: an example of partnership between a research institute in Bolzano and the South Tyrolean Health System. Both cases seem to point in the same direction, suggesting expediency of promoting and improving public-private partnerships to manage biological tissues and biotrust to conciliate patent law and public interest.

  • 44. Kalokairinou, L
    et al.
    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.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Fisher, E
    Flatscher-Thöni, M
    Hartlev, M
    van Hellemondt, R
    Juškevičius, J
    Kapelenska-Pregowska, J
    Kováč, P
    Lovrečić, L
    Nys, H
    de Paor, A
    Phillips, A
    Prudil, L
    Rial-Sebbag, E
    Romeo Casabona, CM
    Sándor, J
    Schuster, A
    Soini, S
    Søvig, KH
    Stoffel, D
    Titma, T
    Trokanas, R
    Borry, P
    Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 117-132Article, review/survey (Refereed)
    Abstract [en]

    Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients’ rights.

  • 45.
    Viberg, 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.
    Segerdahl, Pär
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hösterey Ugander, Ulrika
    Clinical Genetics, Sahlgrenska University Hospital.
    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.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet..
    Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research2018In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 3, p. 422-427Article in journal (Refereed)
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

  • 46.
    Whichello, Chiara
    et al.
    Erasmus Univ, Rotterdam, Netherlands.
    Schölin Bywall, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Mauer, Jonathan
    Pfizer Inc, New York, NY USA.
    Watt, Stephen J.
    Pfizer Inc, New York, NY USA.
    Cleemput, Irina
    KCE Belgian Healthcare Knowledge Ctr, Brussels, Belgium.
    Anne, Cathy
    Merck & Co Inc, Kenilworth, NJ USA.
    van Overbeeke, Eline
    Katholieke Univ Leuven, Leuven, Belgium.
    Huys, Isabelle
    Katholieke Univ Leuven, Leuven, Belgium.
    Janssens, Rosanne
    Katholieke Univ Leuven, Leuven, Belgium.
    Hermann, Richard
    AstraZeneca, Gaithersburg, MD USA.
    Veldwijk, Jorien
    Erasmus Univ, Rotterdam, Netherlands.
    Mapping benefit-risk decision-making processes and identifying decision points with the potential to include patient preference information throughout the medical product lifecycle2018In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 206-206, article id 443Article in journal (Other academic)
  • 47.
    Howard, Heidi Carmen
    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.
    Iwarsson, Erik
    Karolinska Inst, Karolinska Univ Hosp, Dept Mol Med & Surg, CMM L8 02, Stockholm, Sweden.;Karolinska Inst, Karolinska Univ Hosp, Ctr Mol Med, CMM L8 02, Stockholm, Sweden..
    Mapping uncertainty in genomics2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 117-128Article in journal (Refereed)
    Abstract [en]

    The relatively novel and dynamic science of genomics holds many unknowns for stakeholders, and in particular for researchers and clinicians, as well as for participants and patients. At a time when many authors predict a future in which genomic medicine will be the norm, it is particularly relevant to discuss the unknowns surrounding genetics and genomics, including the notions of risk and uncertainty. This article will present a discussion regarding the uncertainty pertaining specifically to high throughput sequencing approaches, including the topic of incidental findings. This discussion will be guided by a taxonomy of uncertainty conceptualised around three areas of uncertainty: the source of uncertainty, the issues of uncertainty and the loci of uncertainty. This taxonomy can be used as a tool by all stakeholders involved in genomics to help further understand and anticipate uncertainties in genomics. Furthermore, to better contextualize this information, and also because this contribution is born out of an international project titled Mind the Risk', which addresses risk information in genetics and genomics from many different disciplinary perspectives, another aim of this article is to briefly present the basic issues pertaining to the unknowns, risks, and uncertainties of genetics as well as genomics for an audience of non-geneticists. Ultimately, the mapping out of uncertainty in genomics should allow for a better characterization of the uncertainty and consequently for a better management and communication of these uncertainties to end-users (research participants and patients).

  • 48.
    Howard, H.C.
    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.
    Iwarsson, E
    Mapping Uncertainty in Genomics2018In: Journal or Risk Research, Vol. 21, no 2, p. 117-128Article in journal (Refereed)
  • 49.
    Gainotti, Sabina
    et al.
    Ist Super Sanita, Bioeth Unit, I-00161 Rome, Italy.
    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.
    Bros-Facer, Virginie
    EURORDIS Rare Dis Europe, F-75014 Paris, France.
    Petrini, Carlo
    Ist Super Sanita, Bioeth Unit, I-00161 Rome, Italy.
    Floridia, Giovanna
    Ist Super Sanita, Bioeth Unit, I-00161 Rome, Italy.
    Roos, Marco
    Leiden Univ, Med Ctr, NL-2333 Leiden, Netherlands.
    Salvatore, Marco
    Ist Super Sanita, Natl Ctr Rare Dis, I-00161 Rome, Italy.
    Taruscio, Domenica
    Ist Super Sanita, Natl Ctr Rare Dis, I-00161 Rome, Italy.
    Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues2018In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 15, no 10, article id 2072Article, review/survey (Refereed)
    Abstract [en]

    The time required to reach a correct diagnosis is a key concern for rare disease (RD) patients. Diagnostic delay can be intolerably long, often described as an odyssey and, for some, a diagnosis may remain frustratingly elusive. The International Rare Disease Research Consortium proposed, as ultimate goal for 2017-2027, to enable all people with a suspected RD to be diagnosed within one year of presentation, if the disorder is known. Subsequently, unsolved cases would enter a globally coordinated diagnostic and research pipeline. In-depth analysis of the genotype through next generation sequencing, together with a standardized in-depth phenotype description and sophisticated high-throughput approaches, have been applied as diagnostic tools to increase the chance of a timely and accurate diagnosis. The success of this approach is evident in the Orphanet database. From 2010 to March 2017 over 600 new RDs and roughly 3600 linked genes have been described and identified. However, combination of -omics and phenotype data, as well as international sharing of this information, has raised ethical concerns. Values to be assessed include not only patient autonomy but also family implications, beneficence, non-maleficence, justice, solidarity and reciprocity, which must be respected and promoted and, at the same time, balanced among each other. In this work we suggest that, to maximize patients' involvement in the search for a diagnosis and identification of new causative genes, undiagnosed patients should have the possibility to: (1) actively participate in the description of their phenotype; (2) choose the level of visibility of their profile in matchmaking databases; (3) express their preferences regarding return of new findings, in particular which level of Variant of Unknown Significance (VUS) significance should be considered relevant to them. The quality of the relationship between individual patients and physicians, and between the patient community and the scientific community, is critically important for optimizing the use of available data and enabling international collaboration in order to provide a diagnosis, and the attached support, to unsolved cases. The contribution of patients to collecting and coding data comprehensively is critical for efficient use of data downstream of data collection.

  • 50.
    Farisco, Michele
    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.
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Neuroethics: A Conceptual Approach2018In: Cambridge Quarterly of Healthcare Ethics, ISSN 0963-1801, E-ISSN 1469-2147, Vol. 27, no 4, p. 717-727Article in journal (Refereed)
    Abstract [en]

    In this article, we begin by identifying three main neuroethical approaches: neurobioethics, empirical neuroethics, and conceptual neuroethics. Our focus is on conceptual approaches that generally emphasize the need to develop and use a methodological modus operandi for effectively linking scientific (i.e., neuroscience) and philosophical (i.e., ethics) interpretations. We explain and assess the value of conceptual neuroethics approaches and explain and defend one such approach that we propose as being particularly fruitful for addressing the various issues raised by neuroscience: fundamental neuroethics.

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