What we were worried about was delivering our professional duty of care, and in other parts of medicine the professional duty of care focused largely on the individual was much better defined than with clinical genetics initially. We were feeling our way, particularly in the 1970s and 1980s. And just to talk about giving bad news, in 1966 when I was a house officer, I told a patient who was having a biopsy for what might be Hodgkin disease, I think, I promised that I would tell her the result when she came back from the operation. My consultant was horrified. He said, ‘You can’t just take it upon yourself to do that, but if you’ve promised…’ I said, ‘Well, I’ll deal with it’, and he said, ‘Well, I’ve seen the hope drain out of their faces when you give them that news’. That would seem amazing now, but in developing the clinical practice in clinical genetics we basically just hung on: ‘What is our professional duty of care?' Professor Marcus Pembrey, Medical Genetics: Development of Ethical Dimensions in Clinical Practice and Research
Professor Marcus Pembrey MD FRCP FRCOG FRCPCH FMedSci (b. 1943) is Emeritus Professor of Paediatric Genetics at the Institute of Child Health, University College London and visiting Professor of Paediatric Genetics at the University of Bristol. He graduated from Guy’s Hospital in 1966 with an interest in paediatrics and medical genetics, then studied benign sickle cell in Eastern Saudi Arabia while training in clinical genetics with Paul Polani at Guy’s. In 1979 he was appointed head of the new Mothercare Unit of paediatric genetics at the Institute of Child Health and honorary consultant in clinical genetics at Great Ormond Street Hospital for Children. Here he helped develop clinical DNA analysis services, contributing to the Department of Health’s Special Medical Development on this. His research focused on irregular inheritance, initially fragile X syndrome and then Angelman syndrome and genomic imprinting. This led to his current interest in transgenerational responses to early life exposures. He helped Jean Golding launch the Avon Longitudinal Study of Parents and Children (ALSPAC) in Bristol, being Director of Genetics within ALSPAC from 1989 to 2005. He was Adviser in Genetics to the Chief Medical Officer UK (1989–1998) and President of the European Society of Human Genetics (1994–1995).
Professor Pembrey has also contributed to Wellcome Witness Seminars on Clinical Genetics in Britain: Origins and development, and chaired our Genetic Testing meeting
Video interviews with Professor Pembrey are available here.