Archive of Consultation Responses:

Policy Archives for 2009

Please see below the 2009 archives of Genetic Alliance UK's policy and campaigning work...

(Note: Genetic Alliance UK was previously called Genetic Interest Group (GIG) and changed its name on 1st June 2010)

Patient's Views on Animal Research
A joint statement from European Patient Organisations in response to the review of Directive 86/609/EEC on the protection of animals used for experimental and scientific purposes.
European Genetic Alliances Network (EGAN)European Men's Health Forum (EMHF)European Multiple Sclerosis Platform (EMSP)European Patient's Forum (EPF)Rare Diseases Europe (EURORDIS)

Statement of best practice for critical illness cover - Association of British Insurers
Joint response from the Genetic Interest Group and Ataxia UK

European Medicines Agency Transparency Policy
Response from the Genetic Interest Group

Health Committee Enquiry on Commissioning in England
Response from the Genetic Interest Group

Medical profiling and online medicine: the ethics of "personalised" healthcare in a consumer age
Nuffield Council on Bioethics
Response from the Genetic Interest Group

Proposals for the future of specialised and tertiary services - Welsh Assembly Government
Response from the Genetic Interest Group

Protection of Animals used for scientific purposes
Letter from GIG and the Association of Medical Research Charities in follow up to the event held in Apri.

The Genetic Interest Group (on behalf of EGAN, the European Genetic Alliance Network) and the Association of Medical Research Charities held a meeting in the European Parliament for patients to meet MEPs to discuss the ongoing review of Animal Welfare legislation in the EU. The event was well attended with representatives from many other UK and European charities. More details can be found in our follow up letter to MEPs which can be found here.

The Association of Medical Research Charities, the Genetic Interest Group and Understanding Animal Research are launching a Remember the Patients campaign. It is imperative that patients get in touch with their MEPs and communicate their desire for good quality biomedical research involving animals to be allowed to continue. Please visit the Remember the Patients page for more information.

The Department of Health's consultation on proposals to improve information sharing around multi-disciplinary assessment and care planning with their proposed Common Assessment framework can be found here. The Genetic Interest Group's response can be found here; we raised concerns about the suitability of this proposal to patients with inherited conditions due to privacy concerns, and to patients with rare conditions due to the focus upon local healthcare provision.

The National Institue for Health and Clinical Excellence's Citizen's Council has published a report entitled "Departing from the Threshold", discussing the criteria upon which it may be possible to depart from NICE's Quality Adjusted Life Year (QALY) model. The report is available here. GIG's response to their report is available here.

In January 2009, the National Institue for Health and Clinical Excellence commissioned Professor Sir Ian Kennedy to prepare a report on valuing innovation. GIG answered the call for evidence, and our response can be found here. Professor Sir Ian Kennedy's study was aimed at answering the following questions.

  • What approach should be adopted by NICE to ensure that innovation is properly taken into account when establishing the value of new health technologies?
  • Should particular forms of value be considered more important than others?
  • How should innovation in health technologies be defined?
  • What is the relationship between innovation and value?

The next step in the study will be two workshops, which GIG will attend in late May 

The Welsh Assembly Government's consultation on the EU Cross-Border Healthcare Initiative will appear on this page soon. The Genetic Interest Group's response can be found here; we put forward the special case of rare disease, and stress the value that cooperation across borders can have for the creation of centres of excellence.

The Department of Health's consultation on regulations to implement the Human Fertilisation & Embryology Act 2008 can be found here. The Genetic Interest Group's response can be found here; we used the opportunity to raise some concerns that the implementation plan could impede research progress.

The General Medical Council consulted on its revision of the standards for undergraduate medical education, Tomorrow's Doctors. The consultation document can be found here. The Genetic Interest Group's response can be found here. GIG used this opportunity to stress that all new medical graduates should have a grounding in genetic healthcare, and an understanding of the special requirements that come with rare diseases.

GIG in Scotland held a public consultation event in December to feed into the Patient Rights Consultation that the Scottish Government had produced.  A response to this document has now been sent in and can be found here.