S1/EP2 - ETHICAL DILEMMAS IN GENOMIC TESTING: RARE OR NOT SO RARE?

In our second episode we talk to Dr John McDermott, Professor Margaret Brazier, Rachel Mahood, and Rachel Corry about ethical dilemmas in clinical trials and first Point of Care Genomic test to be delivered in NICU.

Dr John McDermott is an Academic Clinical Fellow at Manchester Centre for Genomic Medicine and works on the PALOH study.

Professor Margaret Brazier is Professor of Law at the University of Manchester and is one of the foremost medical Lawyers in the United Kingdom. She has an international reputation, not only for the quality of her legal scholarship but also for her role in medical science regulation. Her book Medicine, Patients and the Law is a major reference point in the field. Professor Brazier’s work has covered the understanding of the Regulation of medical practice and medical ethics; the Analysis of how ethical considerations can or should be reflected in Law and mutual rights and responsibilities of doctors and patients.

Rachel Corry is a parent and lay expert/investigator in the PALOH study which is examining the use of pharmacogenetics in neonatal units. This will involve informing parents that testing has occurred to check whether their child has a rare mutation which could have led to hearing loss had standard treatment been followed.

Our RARE/D conversations are hosted by Nichola Garde and Mariangels Ferrer, and aim to stimulate and capture public conversation about one of the biggest changes in how we think about health – what does it mean to have a rare disease and how we all may become “RARE” when genomics becomes part of mainstream healthcare. This project will focus on the psychological, ethical and economic debates and in turn show how social science is helping to shape the health care of the future.

Find out more at www.rare-d.com