PROJECT INFORMATION
Host institution: KU Leuven
Country: Belgium
Supervisory team: Prof. dr. Pascal Borry (PhD promoter, KU Leuven), Dr. Rieke van der Graaf (UMC Utrecht), HALO
PROJECT DESCRIPTON
The objectives are to
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Map systemic translational issues/barriers and strategies for genetically modified lung transplants, based on focus groups with stakeholders and applying implementation science principles and to
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Prepare recommendations for real world translation of LifeLUNG results.
DC13 (UCMU) and DC14 (KUL) will investigate social and ethical aspects related to ex vivo gene therapy on lungs, especially those related to first-in-human trials, and anticipate the ethical aspects related to implementation in clinical practice. DC14, focusing on lung recipients, will use interpretive qualitative methods to develop an empirical and theoretical assessment of the experiences, beliefs, values and expectations of key stakeholders on genetic lung modification and expectations around improved quality of life, also perceived risks will be identified. DC14 will consider issues around informed consent, especially at the stage of clinical trials where not all risks may yet be fully known. Also, attitudes towards genetic modification as an experimental therapy will be investigated, which are relevant for recruitment in clinical trials (synergy DC15) as well as how societal attitudes may affect eventual clinical implementation. This research will involve open-ended semi-structured qualitative interviews, with patients (lung disease) and with healthcare professionals including transplant coordinators, transplantation physicians and nurses. Special attention will be given to reduce network homogeneity by using multiple entry points, which allows to generate a more balanced set of research participants.
A successful project will result in: An empirical and theoretical assessment of the experiences, beliefs, values and expectations of potential recipients of genetically modulated lung transplantation as key stakeholders, including expectations around improved quality of life, and perceived risks. Results of analysis of ethics of fair access, including implications for information disclosure.
Enrolment in Doctoral School: KUL Doctoral school of Biomedical Sciences, Faculty of Medicine
Planned secondments:
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HiTT, Spain: exchange views on fairness of genetically modified lungs and learn about fair pricing (month 9, 30-31)
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UMC Utrecht, Netherlands Work with DC14 on conceptual paper (month 25-26)
ESSENTIAL REQUIREMENTS
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You hold a Master’s degree (no PhD) a Master's degree in Philosophy, Law, Biomedical Sciences, Medicine, Bioethics, Social Sciences, another relevant degree (Master's level) with a pronounced interest in area of research.
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You have experience with ethical conceptual thinking and with social scientific methods, such as qualitative methods.
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You are enthusiastic, ambitious, dynamic, flexible, and open to challenges and developments.
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You have good organizational skills and can work independently and make decisions.
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You have excellent social and written communication skills in English.
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You can work in an international multidisciplinary team.
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You are willing to contribute to collective activities of the research group (such as educational services, lab meetings, research proposals, supervision of bachelor and master students, etc.).
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You have not resided or carried out your main activity (e.g. work, studies) in Belgium for more than 12 months in the 3 years immediately prior to the start of his/her assignment.
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Willingness to travel
DESIRABLE SKILLS AND EXPERTISE
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Social and written communication skills in Dutch is desirable