Genetics and learning disability practice: is it part of your role?
Maggie Kirk Professor of Genetics Education, University of Glamorgan, NHS National Genetics Education and Development Centre
Emma Tonkin Education Development Officer (Nursing Professions), NHS National Genetics Education and Development Centre
Owen Barr Senior Lecturer, Institute of Nursing Research and School of Nursing, University of Ulster
Maggie Kirk and colleagues raise questions about the extent to which nurses should understand the implications of genetics research and include a questionnaire designed to inform the direction of future work by the NHS National Genetics Education and Development Centre
In her work as a learning disability nurse, Sarah had become aware that parents of people with learning disabilities were increasingly asking her about their family history in relation to a particular condition – for example, Fragile X, Down syndrome or Angelman syndrome. Often these questions seemed to follow a newspaper headline or an item on the news – or even the latest storyline in one of the television soaps – about a genetic link being found for a condition or a possible new treatment because scientists had unravelled a little more of the underlying cause of the disease through genetics research. It seemed to Sarah that genetics was creeping into the news more and more. She had been to a seminar on the subject and found it interesting; in fact, she wondered why she hadn’t really thought about it before in relation to her practice. She spoke to her colleague Polly, a genetics nurse specialist who said she had been approached quite a few times of late for more information about genetic tests and so on. Polly told her about a course at the local university where she could learn more about genetics and what she needed to know to include it more in her practice. Sarah was enthusiastic about the course and approached Julie, her line manager. She was really disappointed when Julie said: ‘No, sorry, I can’t let you go on this. Genetics is of no relevance to your practice at all.’
Learning Disability Practice. 9, 7, 33-36. doi: 10.7748/ldp2006.09.9.7.33.c7667