Knowledge of patients' experiences of and preferences for the provision of genetic information is an important step in ensuring that relevant healthcare professionals are equipped to address patients' needs and concerns. The NHS National Genetics Education and Development Centre has published a report outlining findings from a project which explored two key questions:
1. From where do patients receive information about the genetic basis of their condition?
2. How would they prefer to receive such information?
The views and experiences of 27 people with or at risk of genetic conditions and parents of children affected by a genetic condition were explored through telephone interviews. This was an exploratory study. It explored from their personal perspectives, people's accounts and recollections of receiving genetic information. Potential participants were contacted through: the Patient Consultative Panel of the Human Genetics Commission; the Patient Interest Group of the North West Genetics Knowledge Park; and the Chairpersons of all organisations who are members of the Genetic Interest Group.
One of the main conclusions of the project is that there remains a need for greater awareness of genetic aspects of conditions amongst healthcare professionals. The people interviewed did not expect all healthcare professionals to have detailed knowledge of all genetic conditions, but did feel that healthcare professionals should be more willing to consider the possibility of a genetic condition, to refer patients for information or investigations and to take their concerns seriously.
Participants described receiving genetic information from a range of healthcare professionals and recognised key roles that such healthcare professionals fulfil, including identifying and referring patients appropriately. Whilst they recognised the value of information from specialist genetic services, some patients would prefer their specialty consultant, with whom they had established a rapport, to be more involved in the provision of genetic information. Family practitioners were viewed as the most appropriate healthcare professionals to provide ongoing support and co-ordination of information, a role that participants felt was very important. In general, participants said that more support from healthcare professionals in gaining access to appropriate genetic information would be welcomed.
The interviewees gave useful suggestions for healthcare professionals who provide genetic information:
- Provide up-to-date information about the genetics of the condition
- Provide information in a non-judgemental and unbiased way
- Be mindful of your use of terminology
- Tailor the information provided to the preferences of the individual
- Be aware that genetic information can have an emotional impact for individuals and the wider family
- Inform people where they can access further information. This might include:
i) providing written materials that they can re-read
ii) inviting patients to come back if they have further questions
iii) informing patients and families of relevant patient support groups
iv) informing patients and families of reliable websites.
The findings from this study will inform the ongoing work of the NHS National Genetics Education and Development Centre in supporting genetics education for healthcare professionals in the UK. For example, the Centre has, with Skills for Health and in consultation with a wide range of healthcare professionals, developed National Workforce Competences for Genetics in Clinical Practice for Non-Genetics Healthcare Staff, based on the patient pathway (see Competences for Genetics in Clinical Practice at www.geneticseducation.nhs.uk). The results of this study of patients' views and experiences of receiving genetic information will inform the implementation of these competences into clinical practice.
The full report of the study's findings can be accessed through the NHS National Genetics Education and Development Centre's website at: www.geneticseducation.nhs.uk.