GTC8.2014 Communicate genetic and genomic information to individuals, families and other healthcare staff

Overview

This standard is about communicating genetic information to individuals and families with, or at risk of, a genetic condition and communicating appropriate genetic information to other healthcare staff in the patient pathway. There exists a variety of beliefs and understanding around genetic concepts. Some languages may not have specific words for genetic terms. It is important that your communication skills take account of background, language and level of understanding. This is a standard which may be generally applicable to healthcare staff in a wide variety of roles. Users of this standard will need to ensure that practice reflects up to date information and policies. Version No 2

Knowledge and Understanding

You will need to know and understand:

1. the symptoms, clinical signs and modes of inheritance of genetic conditions relevant to your area of practice
2. how the management of disease can be influenced by information from the genome
3. the ethical, legal and social implications of genetic or genomic information for individuals and families
4. the psychosocial and cultural implications of genetic or genomic information for individuals and families
5. consent and confidentiality guidelines
6. the beliefs, concerns and expectations of individuals and their families associated with their genetic or genomic status
7. the role of specialist genetics services
8. where to obtain information and support for individuals affected by, or at risk of, a genetic condition
9. how to assess an individual's level of understanding, prior knowledge and misconceptions
10. how to present information in ways appropriate for different individuals
11. effective communicative skills and strategies consistent with levels of understanding, background, culture and preferred ways of communicating, including working with interpreters
12. how genetic or genomic information may impact on an individual and their immediate and extended family
13. the reasons why genetic consultations should be non-directive in supporting the individual to make informed choices

Performance Criteria

You must be able to do the following:

1. ensure sufficient time and an appropriate environment are available for the consultation
2. identify the specific needs of the individual including preferred language, method of communication and any translation services needed
3. ensure relevant resources are available if required
4. assess the individual's current level of understanding of the genetic condition and their beliefs, concerns and expectations regarding the implications for themselves and their family
5. communicate information about a genetic condition in an comprehensible, accessible, sensitive and non-directive manner, being aware of the impact genetic information may have on an individual / family
6. ensure any genetic or genomic information you give to the individual is within the limits of your role, responsibility, knowledge and experience
7. encourage the individual to ask questions throughout the consultation
8. provide sources of information and support to individuals and others following the identification of genetic or genomic conditions
9. discuss any ethical, legal and psychosocial implications of a genetic diagnosis
10. respect the confidentiality of individuals and their families
11. communicate appropriate genetic and genomic information to other healthcare staff in the patient pathway as required and ensure accurate and appropriate records are maintained

Additional Information

This National Occupational Standard was developed by Skills for Health. This standard links with the following dimension within the NHS Knowledge and Skills Framework (October 2004): Dimension: HWB2 Assessment and care planning to meet people's health and wellbeing needs