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Content archived on 2024-05-29

Right to an Open Future?: An Ethnographic study of parents and professionals experiences of the diagnostic and predictive genetic testing of children in the Era of Genomics


This project will be an in-depth qualitative study of the practice and social consequences of the diagnostic and predictive genetic testing of children, focusing specifically on the experiences of parents and health professionals.

The study will be based a t the Research Centre for Biotechnology, Society and the Environment (BIOGUM) at the University of Hamburg and carried out by Dr. Jacquelyne Luce in cooperation with children's hospitals, clinics and genetic research centres in a multicultural region of Germany.

The objectives of this project are to use rich in-depth interview and participant-observation methods to investigate:
- how distinctions between diagnostic and predictive testing are made;
- what meanings are given to the age of the child at the time of the proposed test; and
- the reasons given for the test request, by either parent or professional.

In doing so, the project will open up a discussion of current guidelines based on empirical findings, explore the implications of a current proliferation of possible genetic tests following the completion of the Human Genome Project, and address the genetic testing of children for not only healthcare purposes but also current research into the complexities of genomics.

Dr. Luce will achieve:
- new disciplinary skills in clinical and lab settings;
- skill at translating findings into policy recommendations;
- German language fluency and cultural competencies; and
- advanced leadership and teaching skills.

The fellowship will enable Dr. Luce to lead a multi-disciplinary project involving parents, clinicians, geneticists, technicians, and science and medicine students with the support of high profile mentors, further contributing to the identified Community objective of developing ¿scientists¿ critical thinking and responsiveness to societal concerns.

Call for proposal

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MoorweidenstraÃxe 18

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