This information is for those who are developing services for patients with or at risk of genetic conditions.
Please note that this Toolkit is based on the collected experiences of service development initiatives in genetics and is not intended to be a complete guide to service development; you may also want to consult generic service development resources and expertise within your own organisation.
Many of the pilot projects involved raising awareness within local communities or improving access to services. They identified factors which can influence success when working with different communities and highlighted issues of cultural awareness that may need to be considered when planning a service.
Different communities have different knowledge and awareness of genetics and genetic conditions. Projects found that there is low uptake of genetic services from some communities.
The views of service users are important in establishing how services can be made acceptable and accessible for community members. There may be a culture of stigma or secrecy surrounding genetic conditions in a community.
Religious leaders can influence beliefs about inheritance. Members of some communities will take guidance from community or religious leaders when addressing medical issues.
The older generation can influence community views on genetics. The superstitions, myths and stories in a community may also be important.
There may be a need for information resources in different languages. People whose English is sufficient for day-to-day purposes such as booking appointments may struggle to discuss genetic concepts in English.
Genetic concepts may not translate easily into some languages; some communities do not discuss genetic concepts and therefore the necessary vocabulary does not exist in the community. It can be beneficial to have staff who speak the relevant community languages.
People may be more at ease with someone from their own ethnic background and/or of the same sex. It can be beneficial to have staff who speak the relevant community languages.
Last updated: 13 October 2011
