Most important projects of Philosophy of Medicine and Ethics

Meanings of thinness and dysfunctional eating among black adolescents in post-apartheid South Africa'

'The mere linking of eating disorders with Western pressures conceals other, more implicit motives behind dysfunctional eating practices in non-Western societies. This PhD project considers black South African adolescents, a category typically eluding therapeutic interventions that are based upon Western interpretations of symptoms. It applies a meaning-centred approach, i.e. it aims to depict and understand local body image preferences and motives behind dysfunctional eating, in order for healthcare to be adjusted in a culturally appropriate way.'

Incidental findings in genome-wide sequencing in persons with a mendelian disease: a bioethical study.:

In the Belgian centres 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 counselling. 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 counselling of incidental findings.

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

1. What are the experiences and preferences of (parents of minor) patients with a Mendelian disease on the reporting, consequences and counselling of incidental findings in a diagnostic genetic test?
2. What is the current practice and policy in Belgian centres for medical genetics concerning the reporting, consequences and counselling 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 centres for medical genetics. During the phenomenological and thematic analysis of the data, we pay explicit attention to ethical principles such as autonomy and responsibility.

Treating the real or the digital patient? Impact of the electronic health record on the patient-provider relationship.

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.

1. 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.
2. 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.

The experience of subjectivity of patients with testicular cancer: a qualitative study.

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.

Is sharing a better way of caring? Ethical considerations regarding informational privacy and secondary uses of medical data.

The main objective of this research project is to evaluate how informational privacy in healthcare is valued by patients and general practitioners, especially now e-health makes a large quantity of health data available, and because there is major interest from outside healthcare (for scientific or financial gain) to get access to these data. This project will therefore focus on the following research questions:

1. Do we need to revise informational privacy in order for it to be consistent with digital evolutions in healthcare, such as sharing data of the EMR with parties outside the healthcare context?
2. Is it morally acceptable to use patients’ medical and health-related data without their consent?
3. What are patients’ and general practitioners’ perspectives and moral beliefs on sharing medical data and giving up of informational privacy in order to benefit the common good?

The central point of view throughout the research project is that both patients and general practitioners should be well informed on how data of the EMR is used and should be engaged as stakeholders on which values should be maintained in healthcare.