Genetic Alliance UK in Scotland:
Helping those with genetic conditions in Scotland
Genetic Alliance UK aims to represent and involve families affected by genetic disorders in Scotland to ensure that their collective voice is heard by decision makers such as NHS Scotland and the Scottish Government.
Natalie Frankish is our Development Officer and concentrates on:
- Building and maintaining our Virtual Panel of patient representatives.
- Building an online forum where issues surrounding genetic predisposition and / or disease can be debated.
- Canvassing the views of our members and coordinating responses to consultations.
- Raising awareness of issues affecting patients and their families through the Scottish media.
- Informing the political and professional discussions about the services and resources needed to provide high quality medical genetic services for the future.
- Contributing to public and professional education on genetic issues and developments, and their impact on patients and families.
Genetic Alliance UK in Scotland also work to:
- Develop links with services where genetics in a significant issue, to encourage dialogue between patients, families, voluntary organisations, the public and professionals.
- Engage with and support the work of voluntary groups for those affected by all forms of genetic disorder in Scotland.
- Represent the views of patients and family members, to policy makers and service providers.
- Organise events in Scotland.
Why does Genetic Alliance UK have an office in Scotland?
When the Scottish Government was established in 1999, certain powers were devolved to it, including health, social work and local government. The health sector is structured differently in Scotland and some health policies and systems of regulation differ from those in the rest of the UK. Ethical and legal matters relating to genetics remain with the control of the UK-wide Westminster government. This includes the regulation of genetic tests, xenotransplantation, assisted conception, embryology and abortion. However, other policies concerning healthcare genetics are devolved to the Scottish Government.
Scotland has it's own system of charity regulation and has many separate charities which are relevant to those with genetic conditions or concerns. However, many other charities are organized on a UK-wide or international basis, because genetic conditions are often quite uncommon or very rare, and because of their values of shared-working.
Genetic Alliance UK has established an office in Scotland to ensure that Genetic Alliance UK's representations are relevant to the Scottish context. Genetic Alliance UK in Scotland works in liaison and interaction with the Genetic Alliance (UK) office in London and the Scottish Government.