Report of Presentation given by Dianne Kennard (DoH Genetics Unit) at BSHG conference (24th Sept 2002) on Genetics Green Paper.
Ms Kennard gave a brief presentation on the forthcoming Genetics Green Paper, and took a number of questions thereafter.
Overall about the Green Paper:
· It is intended to publish it late 2002.
· There is no promise of additional funds for the recommendations of the Green Paper as yet, although this was not ruled out.
· It is hoped that it will provide a UK-wide policy (i.e. covering England, Wales, Scotland and Northern Ireland), although this is dependent on respective national authorities.
· The Green Paper is not expected to lead onto a Genetics White Paper (i.e. new legislation)- it will be a statement of policy only.
Themes of the Green Paper will include:
1. Planning for possible future benefits of ‘new genetics’
2. Preparing the rest of the NHS for changes in genetics.
3. Engaging with the public, and setting frameworks for ethical issues.
4. Discussing the role of research and industry in healthcare genetics.
Enlarging on these themes:
1. The new genetics
There is potential with new genetics knowledge to allow more accurate predictions to be made both of disease risk and drug adverse effects risks (pharmacogenetics), thus enabling better targeting of medical interventions, and safer use of medicines. This raises a number of issues about testing a much larger proportion of the population for genetic markers than has previously been done, and raises a wide range of questions.
2. Preparing the NHS
An increased awareness of genetics is required amongst healthcare professionals if the potential benefits of developments in genetics are to be attained. Improved education and training will be required, as well as providing appropriate information at the point of care. The contribution of genetics to practice guidelines and clinical governance will need to be determined.
The Role of Clinical Geneticists.
Clinical geneticists are seen as the lynchpin of DoH Genetics policy. They will need to develop their roles in education of professionals and increasing awareness of the importance of genetics in healthcare. Their specialist knowledge will be essential to ensuring that policy is developed realistically, and their experience will be valuable in developing care pathways and ethical frameworks.
The R
ole of Genetics Laboratories.
Due to the expected increase in both the range and volume of genetic tests being requested, increases in capacity will be required, along with the expertise necessary to support this. Laboratories should initiate an informed debate about changes in laboratory configuration.
Finally Ms Kennard invited contributions to the Green Paper, and suggested that BSHG members could forward these via the society administrator, Ruth Cole.
Reported by Dr Philip Zack