Dr. Julia Perry

Department of Medical Ethics and History of Medicine

Dr. Julia Perry
Georg August University of Göttingen
University Medical Center Göttingen
Department of Medical Ethics and History of Medicine

Humboldtallee 36
37073 Göttingen

Tel.: +49(0)551 39 69315
Mail: julia.perry(at)medizin.uni-goettingen.de
Room: 2.108

ORCID

  • Since August 2023: Research Fellow at the Department of Medical Ethics and History of Medicine within the research project: Preparing Primary Care for Alzheimer’s Disease Risk Communication: Ethical Implications of Early Detection (PREPARE) [further information]
  • May 2020 - December 2022: Research Fellow at the Department of Medical Ethics and History of Medicine within the research project: Well Advised: New Multi-Mode and Standardized Counseling Models for People in Early Stages of Alzheimer’s Disease or in the Context of Dementia Prediction [further information]
  • February 2020 - December 2022: Research Fellow at the Department of Medical Ethics and History of Medicine within the research project: Ethical and Social Issues of Co-Intelligent Monitoring and Assistive Technologies in Dementia Care (EIDEC), Project Coordination [fruther information] [Project website]
  • October 2018 - March 2024: Cumulative dissertation in Sociology, Title: „Participation of Stakeholders for Designing the Future in Health Decisions concerning Dementia“
  • November 2017 - April 2020: Research Fellow at the Department of Medical Ethics and History of Medicine within the research project: Dilemmas of Predictive Dementia Diagnostics: German Stakeholder Conference for Improving Ethics Competence in Healthcare and Life Sciences (Prä-Diadem) [further informtion] [Project website]
  • June - December 2017: Research Fellow at the Department of Medical Ethics and History of Medicine within the research project: Ethical Implications of Early Diagnosis and Prediction of Dementia: A Socio-Empirical Study with Stakeholders
  • 2016 - 2017: Research Fellow at the Department of Medical Ethics and History of Medicine within the research project: Mind the Risk. Ethical, Psychological and Social Implications of Provision of Risk Information from Genetic and Related Technologies [further information]
  • 2016: Master of Arts in Sociology at the University of Göttingen, Master's Thesis: „Dealing with the complexity of medical information in colorectal cancer treatment: Awareness, needs, and uncertainty concerning treatment procedure and participation in biomarker research – a qualitative study of ten patients in longitudinal section“
  • 2015 - 2016: Student research assistant at the Department of Medical Ethics and History of Medicine within the research project: 'Desired Children' in Germany and India as Context for Prenatal Diagnostics and Selective Abortions." [further information]
  • 2012 - 2015: Student research assistant at the Department of Medical Ethics and History of Medicine within the KFO 179/2 Research Network: “Biological Basis of Individual Tumor Response in Patients with Rectal Cancer: Ethical Aspects, Expectations and Attitudes of Patients towards prognostic Tests with Biomarkers. A socio-empirical and bioethical Analysis (Subproject 9) [further information]
  • May - September 2012: Internship at the Tian Shan Policy Center, Bishkek, Kyrgyzstan 
  • 2010: Bachelor of Arts in Sociology at the University of Bremen
  • 2009 - 2010: Erasmus at Stockholm University, Sweden

Research

  • Implications of genetic testing and prediction
  • Dementia & research ethics
  • Medical knowledge of lay people
  • Personalized medicine
  • Physician-patient communication and relationship

Publications

  • Karneboge, J., Haberstroh, J., Geschke, K., Perry, J., Radenbach, K., Jessen, F., & Rostamzadeh, A. Facing the new diagnostic and treatment options of Alzheimer's Disease – The Necessity of Informed Consent. Alzheimer's & Dementia, accepted.
  • Perry, J., Radenbach, K., Geschke, K., & Rostamzadeh, A. Counseling and disclosure practices in predictive Alzheimer’s disease diagnostics: A scoping review. Alzheimer's & Dementiaaccepted.
  • Schicktanz, S., Alpinar-Segawa, Z., Ulitsa, N., Perry, J., & Werner, P. (2024). Moving Towards Ethical-Practical Recommendations for Alzheimer's Disease Prediction: Addressing Interindividual, Interprofessional, and Societal Aspects. Journal of Alzheimer's disease : JAD, 10.3233/JAD-231137. Advance online publication. https://doi.org/10.3233/JAD-231137
  • Köhler, S., Perry, J., Biernetzky, O. A., Kirste, T., & Teipel, S. J. (2024). Ethics, design, and implementation criteria of digital assistive technologies for people with dementia from a multiple stakeholder perspective: a qualitative study. BMC medical ethics, 25(1), 84. https://doi.org/10.1186/s12910-024-01080-6
  • Perry, J., Brose, J., & Radenbach, R. (2023). Well Advised: The Need for Counseling in Early Stages of Alzheimer’s Disease. GeroPsych, 36(4), 189–202. https://doi.org/10.1024/1662-9647/a000318
  • Perry, J. (2022). Challenges of anticipation of future decisions in dementia and dementia research. History and Philosophy of the Life Sciences44(4), 62. https://doi.org/10.1007/s40656-022-00541-8
  • Perry, J., Ruhaas, R. & Sakowsky, R. (2021). Die COVID-19-Pandemie als Impulssetzer für die Lehrgestaltung: Reflexionen aus Lehrenden-Perspektive zur Online-Lehre in der Medizinethik. Ethik in der Medizin. https://doi.org/10.1007/s00481-021-00669-4 
  • Petersen, N., & Perry, J. (2021). Annette Leibing and Silke Schicktanz (eds): Preventing dementia?: Critical perspectives on a new paradigm of preparing for old age : Berghahn Books, New York / Oxford, 2020. Monash bioethics review. Advance online publication. https://doi.org/10.1007/s40592-021-00135-3 
  • Perry, J., Schicktanz, S., Herten, B., Stock Gissendanner, S. (2021). Ethische und soziale Aspekte der Demenzforschung und -versorgung: Materialien für Lehrende und Lernende in Lebens- und Humanwissenschaften. Göttingen: Universitätsverlag Göttingen. https://doi.org/10.17875/gup2021-1599.
  • Schicktanz, S., Perry, J., Herten, B., Stock Gissendanner, S. (2020). Demenzprädiktion als ethische Herausforderung: Stakeholder fordern Beratungsstandards für Deutschland. Nervenarzthttps://doi.org/10.1007/s00115-020-00985-y
  • Jongsma, K., Perry, J. (geteilte Erstautorenshaft), Schicktanz, S., Radenbach, K. (2020). Motivations for people with cognitive impairment to complete an advance research directive – a qualitative interview study. BMC Psychiatry 20(360). https://doi.org/10.1186/s12888-020-02741-7
  • Wöhlke, S., Perry, J. (2019). Responsibility in dealing with genetic risk information, Social Theory & Health. https://doi.org/10.1057/s41285-019-00127-8
  • Perry, J., Wöhlke, S., Metselaar, S., Halpern, J. (2019). Dealing with Misconception in Biomedical Research, Journal of Empirical Research on Human Research Ethics (JEHRE). doi: 10.1177/1556264619831589
  • Jongsma, K., Perry, J., Schicktanz, S. (2018). Forschungsvorausverfügungen in der Demenzforschung: Viele konkrete Fragen sind laut deutscher Experten noch zu klären, Dtsch Arztebl, 115(39): A-1696 / B-1430 / C-1416.
  • Wöhlke, S., Perry, J., & Schicktanz, S. (2018). Physicians’ communication patterns for motivating rectal cancer patients to biomarker research: Empirical insights and ethical issues. Clinical Ethics, 13(4), 175–188. https://doi.org/10.1177/1477750918779304
  • Perry, J., Wöhlke, S., Heßling, A. C. and Schicktanz, S. (2016). Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical-ethical examination. European Journal of Cancer Care, 00: 1–12. doi: 10.1111/ecc.12563
  • Publikation ausgezeichnet als GöVIP (Very Important Publications) in der Kategorie Clinical Science [Link]
  • Wöhlke, S., Perry, J. and Schicktanz, S. (2015). Taking it Personally: Patients’ Perspectives on Personalised Medicine and its Ethical Relevance. In: J. Vollman, V. Sandow, S. Wäscher and J. Schildmann, ed., The Ethics of Personalised Medicine: Critical Perspectives. Farnham: Ashgate, p. 129-147.

Presentations & moderation

  • "Ethische Aspekte in Diagnostik und Therapie dementieller Erkrankungen", Auguste Symposium (Eisai), medical-scientific training event on the topic of Alzheimer's disease/dementia, April 20, 2024, Frankfurt am Main
  • Expert comment on: "Der politische Kampf um den Zugang zu Abtreibung im Kontext reproduktiver Gerechtigkeit - Eine intersektionale Analyse von "pro-choice" Akteur*innen in Deutschland", Promovend*in: Lisa Brünig (Georg-August-Universität Göttingen), 13. niedersächsischer Doktorand*innentag Gender Studies der LAGEN: Solidarität statt Einsamkeit - Gut vernetzt zur Promotion, April 18, 2024, Hochschule Hannover
  • "PREPARE - Risikokommunikation in der zukünftigen hausärztlichen Versorgung bei Alzheimer: Ethische Implikationen einer Alzheimer-Früherkennung", 8. Interdisciplinary discussion forum on ethical, economic and medical challenges before the onset of dementia, Oktober 30, 2023, Frankfurt am Main
  • "Individuelle Beratungsbedarfe und versorgungsstrukturelle Anforderungen im Kontext der Demenz-Prädiktion und Früherkennung – Erkenntnisse aus einer Pilotstudie", 11th Congress of the German Alzheimer's Association, September 29, 2022, Mühlheim an der Ruhr, together with Dr. Katrin Radenbach
  • "Challenging the Concept of Anticipation in Dementia and Dementia Research", Symposium on Ethics, Agency, and Personhood in Dementia, August 17, 2022, Copenhagen
  • "Challenging the concept of anticipation in dementia and dementia research", 16th World Congress of Bioethics, July 20, 2022, Basel
  • "“Being well informed” as the basis for “good care”: Moving towards standards for counseling for dementia prediction and early diagnosis in Germany", 16th World Congress of Bioethics, July 20, 2022, Basel, together with Dr. Zümrüt Alpinar-Sencan
  • "Beratungsbedarfe zur Demenz-Prädiktion und Früherkennung – Erste Erkenntnisse aus einer Pilotstudie", DGPPN Congress 2021, November 24, 2021, Berlin, together with Dr. Katrin Radenbach
  • "Beratung für Menschen in Frühstadien einer Alzheimer-Erkrankung bzw. im Rahmen einer Demenzvorhersage", XV. DGGPP Congress, October 14, 2021, Essen, together with Dr. Katrin Radenbach
  • "Ethische Anforderungen an die Entwicklung der Personalisierten Medizin", Menschen als Datensätze? Personalisierte Medizin und Perspektiven von „Behinderung“, Digital Workshop of the Institut Mensch, Ethik und Wissenschaft (IMEW) und Katholische Akademie in Berlin, June 25, 2021, Online
  • “Challenges of anticipation in dementia and dementia research – A theoretical and empirical examination in the context of Germany”, Works-In-Progress series at the Center for Science, Technology, & Society, Department of Politics, Drexel University, Philadelphia, PA, May 05, 2021, Online
  • "Advance research directives for dementia research – What do affected people think? Insights from an interview study in Germany", International Online Symposium: Dementia Prediction and Risk Reduction: Socio-Cultural Insights, Ethical Reflections and Future Developments, December 07-08, 2020, Online, together with Dr. Karin Jongsma
  • "Patientenrechte wahrnehmen: Stakeholderbeteiligung für mehr Mitbestimmung aller relevanten Gruppen", Nursing Ethics Congress, March 04-06, 2020, Vienna, together with Adm. Prof. Dr. Sabine Wöhlke
  • "Stakeholder-Beteiligung als Methode: eine Reflexion", Annual Conference of the German Academy of Ethics in Medicine (AEM), September 28, 2019, Göttingen
  • "Zur Relevanz der Beteiligung von Patientenorganisationen an gesundheitspolitischen Entscheidungen am Beispiel der personalisierten Medizin" Workshop at the Annual Conference of the German Academy of Ethics in Medicine (AEM), September 27, 2019, Göttingen, together with Dr. Sabine Wölke and Carolin Rauter, cand. med
  • "Stakeholder-Involvement for the Prospective Assessment of Medical Technologies: A Methodological Reflection", EACME Annual Conference: Rethinking Ethics in 21st Century Europe, September 13, 2019, Oxford
  • "Advance research directives: Anticipating future research commitment in the context of dementia research",Conference Preparing for Physicians. The ambivalences of empowerment, June 28, 2019, Siegen
  • "Advance research directives: Anticipating future research commitment in the context of dementia research", Conference Bioethics and Human Temporality. Perspectives from the Beginning, Middle and End of Life, May 28, 2019, Oldenburg
  • “Stakeholder-Beteiligung zur prospektiven Einschätzung medizinischer Technologien: eine methodische Reflexion“, Conference Befragen oder Beteiligen? Die Rolle von Stakeholdern in der Gesundheitsforschung, March 28, 2019, Munich
  • "Enhancing ethical awareness and communication skills: The first Germany-wide stakeholder conference on dementia prediction", Conference "Alzheimer Europe", October 30, 2018, Barcelona
  • "Dilemmas of predictive dementia diagnostics: German stakeholder conference for improving ethics competence in healthcare professions", Conference "EACME", September 06, 2018, Amsterdam
  • "Wie stehen Betroffene zu Forschungsvorausverfügungen? - Konzepte und Ergebnisse empirischer Forschung", Conference "Forschung mit besonders vulnerablen Gruppen in der Psychiatrie. Ethische Herausforderungen in der forensisch-psychiatrischen Forschung und der klinischen Demenzforschung" AG "Ethik in der Psychiatrie" German Academy of Ethics in Germany (AEM), February 7, 2018, Göttingen
  • "Stakeholder-Diskurs: Konfliktfall Demenzvorhersage", Conference "Menschenrechte für Personen mit Demenz" University of Erlangen-Nürnberg, November 10-11, 2017, Nürnberg - won award
  • "Physicians’ communication patterns for motivating rectal cancer patients to biomarker research participation: empirical insights and ethical issues", 31st European Conference on Philosophy of Medicine and Health Care, August 16-19, 2017, Belgrade, Serbia
  • "The risks they are a changin’ – How do individual differences in disease perception affect the opportunities and limitations of predictive genetic testing", Mind the Risk Project Workshop, February 20-22, 2017, Bowness on Windermere, UK
  • "Barriers of informative communication and patients’ needs when it gets risky. Colorectal cancer patients involved in biomarker research – results from a qualitative study", Third International Mind the Risk Project Workshop “From theory to practice: Clinical and practical applications of genetic risk research”, May 12-13, 2016, Birmingham, UK
  • Moderation of the discussion of the film "Coma" with two experts on the topic “Error Culture in Medicine” within the film series: “Bioethik im Film Vol. II, Ethics’ Anatomy” at the movie theater Lumière in Göttingen, May 5, 2015 
  • "Wer versteht das schon? Grenzen der Kommunikation und des Verstehens von Patienten in der Biomarker-Forschung", Jahrestagung der Akademie für Ethik in der Medizin "Technisierung der Medizin als ethische Herausforderung", October 9-11, 2014, Ulm

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