Ethics, autonomy and responsibility in healthcare

Prof. dr. Ignaas Devisch

Ignaas.Devisch@ugent.be

Supervisor:

PhD Ignaas Devisch (1970) is professor in Ethics, Philosophy and Medical Philosophy. He holds a position at Ghent University, department of Primary Care and Family Medicine, and is affiliated with BIG (Bioethics Institute Ghent) and Artevelde University College, Belgium and was researcher for five years at the Radboud University Nijmegen. He publishes in the fields of medical philosophy, philosophy and ethics. He organised the ESPMH conference in 2015 in Ghent.

He was chairman of a Belgian organisation (de Maakbare Mens) which reflects ethically and philosophically upon biomedical evolutions. (www.demaakbaremens.org)

As a philosopher, he works at the faculty of Health Sciences and Medicine. Since 2003, he teaches philosophy of medicine, ethics and bioethics.

Research areas:

philosophy of medicine (patient autonomy; responsibility; lifestyle; obesity; justice); ethics; His research focuses mainly on Autonomy, lifestyle and responsibility in healthcare. Some recent publications:

Some recent articles

  • (2012) Devisch, Ignaas, Nudging and obesity: how to get rid of paternalism? Journal of Nursing Education and Practice, DOI 10.1007/s10728-011-0175-y
  • (2012) Devisch, Ignaas, The tribunal of modern life: The case of UZ Brussels in the light of Odo Marquard’s discussion of autonomy and theodicy. The Journal of Evaluation of Clinical Practice (accepted on April, 29, 2012)
  • (2014) Devisch, Ignaas en Vanheule Stijn, Singularity and medicine: is there a place for heteronomy in medical ethics?  DOI: 10.1111/jep.12110
  • (2015) Devisch, Ignaas and Vanheule Stijn, Foucault at the bedside: a critical analysis of empowering a healthy lifestyle. JECP; doi: 10.111/jep.12329

Books

  • (2012) Devisch, Ignaas et al. Retreating religion. Fordham University Press, New York
  • (2012) Devisch, Ignaas, Jean-Luc Nancy and the question of community (Bloomsbury Press)
  • (2013) Devisch, Ignaas et al, (Sick of Health) Ziek van gezondheid. Voor elk probleem een pil? De Bezige Bij, Antwerpen.
  • (2016) Devisch, Ignaas, Rusteloosheid (Restlessness) (De Bezige Bij, Amsterdam)

Full list of publications: https://biblio.ugent.be/person/801001238122

PhD Projects

Timing:

From January 2016 on

Funded by

GOA

Supervisors

  • Prof. Ignaas Devisch
  • Prof. Heidi Mertes
  • Prof. Elfride De Baere

PhD researcher

  • Marlies Saelaert

Project aims

Genetic testing is evolving at full speed and there is a constant increase of its possibilities. More and more, people with a Mendelian disease are diagnostically tested by whole genome or whole exome sequencing. This technique allows to detect mutations in the entire genome, resulting in a better diagnosis of hereditary diseases and a more effective treatment.

However, sequencing the whole genome/exome can also reveal “incidental findings”. These incidental findings are not related to the initial indication for the genetic test, but they might have a (future) medical value for the patient and/or his relatives. Incidental findings can be a great opportunity for early treatment and intervention, yet they also raise important bioethical questions.

In the Belgian centers for medical genetics, there are, up till now, no standard rules or recommendations on how to report incidental findings and their consequences or on how to organize the patient’s counseling. Moreover, literature is characterized by a lack of studies on the experiences and preferences towards incidental findings of (parents of minor) patients themselves. This scientific absence of the first person perspective is in strong contrast with i.a. the principle of patient autonomy which is one of the central values in current medicines. If we still want to respect this value, it is absolutely necessary to look for the intersection between patients’ preferences and professionals’ practice concerning the report and counseling of incidental findings.

To realize this, we perform an empirical and qualitative study, guided by two main questions:

  • I: What are the experiences and preferences of (parents of minor) patients with a Mendelian disease on the reporting, consequences and counseling of incidental findings in a diagnostic genetic test?
  • II: What is the current practice and policy in Belgian centers for medical genetics concerning the reporting, consequences and counseling of incidental findings in a diagnostic genetic test?

To answer these questions, we, respectively, interview (parents of minor) patients with a Mendelian disease who get a diagnostic genetic test and we organize focus groups with professionals of the Belgian centers for medical genetics. During the phenomenological and thematic analysis of the data, we pay explicit attention to ethical principles such as autonomy and responsibility.

Publications and reports :

In progress

More information and contact

Timing

start October 2015; end: academic year 2019-2020

Funded by

None (FWO Clinical PhD fellowship: submission planned Feb 2017)

Supervisors

  • prof. Ignaas Devisch
  • prof. An De Sutter
  • prof. Veerle Provoost

PhD researcher

Tania Moerenhout

Project outline

Information and communication technology (ICT) is not only omnipresent in our everyday lives, it has also come to affect our experience of health and health care. Health apps are ubiquitous, dr. Google is always available and the family practice as well as the hospital have become 'digital' in many aspects. The digitalization of health care, generally coined with the term e-health, invades the field of medicine at a very high pace. This extensive adoption of ICT in health care brings forth high expectations of a more efficient and cost-effective care with reduced errors. Moreover, patients in this new health era are often depicted as empowered, autonomous agents, controlling the necessary tools and information to take their health into their own hands.

This study will focus on one particular aspect of e-health, namely the electronic health record (EHR). The widespread use of electronic health records (EHR) intensifies the process of health information exchange (HIE). The locus of medical information is being transferred from the intimacy of the patient-doctor relationship to the cloud, where other care providers and –organizations, but also patients, can access that information. Many countries have recently engaged in eHealth initiatives aimed at facilitating the adoption of national electronic (patient) health records. This leads to one main research question: how will the current evolution of the EHR affect the patient-provider relationship? More specifically we will examine its effect on patient autonomy, responsibility and trust.

The research outline consists of two pathways. The first is a conceptual analysis of the EHR and its integration in the patient-provider relationship. This will be established by bringing together elements from the philosophy of information, the philosophy of technology (technological mediation and postphenomenology) and the philosophy of medicine. Secondly, we will augment this conceptual framework with empirical research in a mixed methods scheme. The main methodology will consist of qualitative research through in-depth interviews with care providers. Next to that we will engage in experimental philosophy using a vignette study in order to elicit patients’ ethical intuitions on this subject. The ultimate goal is to provide recommendations for future design and development of the EHR based on the philosophical and ethical findings of this study.

Publications and reports:

the first paper entitled ‘Will e-health cause a revolution in medicine? A philosophical analysis of the emerging and dynamic system of e-health’ has been submitted in Medicine, Health Care and Philosophy (under review).

More information and contact

Timing:

From oktober 2015 on

Funded by:

de Vlaamse Liga tegen Kanker

Cooperation

between University Ghent and the department of Medical Oncology of the University Hospital of Ghent

Project aims

Testicular cancer mostly affects young men who are in the prime of life: beginning their career, starting a family and in great health. The diagnosis and treatment of testis cancer has a profound impact on the lives of these patients, putting it to a stop and confronting them with some existential questions. With an interdisciplinary research team (ethics, clinical psychology and medical oncology) this studies focusses on how persons with testicular cancer experience self, illness, social relationships and the provided care throughout and after treatment. Because the aim of the study is to explore the experiences of these patients, the data consists of in-depth interviews on which an interpretative phenomenological analysis (IPA) will be conducted. Thorough this research we aim to optimize the provided care, so that it can be more adjusted to the needs of this specific patient group.

Publications and reports

In progress

More information and contact

Contact: Yasmien.DeLy@ugent.be or Ignaas.Devisch@ugent.be

More information: http://www.komoptegenkanker.be/project/de-beleving-van-zelf-ziekte-sociale-relaties-en-zorg-door-patienten-met-testiskanker

More information in English: http://www.crig.ugent.be/en/yasmien-b-de-ly-md