House of Lords Science and Technology Committee
Genomic Medicine Inquiry - Call for Evidence
The House of Lords Science and Technology Committee has appointed Sub-Committee II, chaired by Lord Patel, to look at genomic medicine. Recent advances in technology are making it possible to carry out genome-wide comparison studies with the prospect of finding out what variations in our genomes make us more susceptible to certain complex common diseases such as diabetes, heart disease and cancer. However the science is still in its early stages and the Committee is seeking to identify the state of progress in genomic medical research and how its translation into clinical practice can be facilitated. The inquiry will provide an assessment of genome technologies and their actual and potential impact on clinical practice in the post-genome era.
The Committee invited interested parties to submit written evidence on the questions below. The deadline for written evidence submissions was Monday 21 April 2008.
Policy Framework
Who is in charge of setting and reviewing policy in this area?
Who provides scientific advice on policy development? Who monitors and anticipates potential scientific developments and their relevance to future policy? How effective are these mechanisms?
Does the existing regulatory and advisory framework provide for optimal development and translation of new technologies? Are there any regulatory gaps?
In what way is science and clinical policy decision-making informed by social, ethical and legal considerations?
How does the framework compare internationally?
Research and Scientific Development
What is the state of the science? What new developments are there? What is the rate of change?
Who is taking the lead in the consideration and co-ordination of research and the development of new technologies?
How effective is the policy and investment framework in supporting research in this area?
How does research in the UK compare internationally? How much collaboration is there?
What are the current research priorities?
What is the role of industry? How much cross-sector collaboration takes place?
Data Use and Interpretation
Is genomic information published, annotated and presented in a useful way? Should there be a common, public database? If so, who should fund, and have responsibility for, such an initiative?
Who should provide the framework for optimal evaluation of data and translational opportunities? What policy and funding mechanisms are in place for recognising and utilising potential opportunities?
Is other medical information recorded in a suitable format to allow optimal interpretation of genomic data? How should genomic data be brought together with other health information?
What are the implications of the generation and storage of genome data on personal data security and privacy, and on its potential use or abuse in employment and insurance? How should these be addressed?
Translation
What opportunities are there for diagnostics, therapeutics and prognostics - now and in the future?
Who is responsible for translation to clinical practice?
Given the pace of technological advance, how ‘future-proof’ is healthcare investment in this area?
How does the UK compare to other countries and what lessons can be learnt?
How meaningful are genetic tests which use genome variation data? What progress has been made in the regulation of such tests?
Biomarkers and Epidemiology
In what way do genome-wide association studies contribute to the identification of biomarkers? How is the study of genetic factors and biomarkers integrated for translational purposes?
What impact will genomic data have on data emerging from projects such as UK Biobank, Generation Scotland and other biobanks?
Use of genomic information in a healthcare setting
What impact will genomic information have on the classification of disease? How will it affect disease aetiology and diagnostic labels?
How useful will genomic information be as part of individualised medical advice? What provisions are there for ensuring that the individual will be able to understand and manage genomic information, uncertainty and risk?
Should there be a regulatory code (mandatory or voluntary) covering the provision of this advice?
What are the implications of developments in genomic technologies for the training of medical specialists and other health professionals? Are there any gaps that need addressing? What is the assessment and planning for future needs in capacity?
For further information on the inquiry please contact Elisa Rubio, Clerk to Sub-Committee II, either by telephone: 020 7219 4827 or email: rubioe@parliament.uk
The deadline for submitting written evidence is Monday 21 April 2008. The Committee will hold public meetings from late April. It is expected that the Committee's report will be published at the end of 2008.
Submissions should be sent to:
Elisa Rubio
Clerk of the Science and Technology Sub-Committee II
House of Lords
London SW1A 0PW
and preferably by email to: rubioe@parliament.uk
Please ensure that you include relevant contact details. Evidence should be attributed and dated, with a note of your name and position, and should state whether it is submitted on an individual or corporate basis.
Short submissions are preferred; longer submissions (more than 6 pages) should include a summary. Paragraphs should be numbered. Electronic documents should be in Word format (please do not send PDFs). Hard copy should be clearly printed or typed on single sides of A4 paper, unstapled.
Evidence should be prepared specifically for this inquiry. Witnesses are encouraged to focus on those issues of which they have particular knowledge or experience—submissions are not required to cover all questions.
Evidence becomes the property of the Committee, and may be printed, published electronically or circulated by the Committee at any stage. If your evidence is not printed, it will in due course be made available to the public in the Parliamentary Archives.
You may in addition publicise or publish your evidence yourself, but in doing so you should indicate that it was prepared for the Committee. If a submission is substantially the same as work that has already been published or disseminated for some other purpose, or is deemed not to be relevant to the inquiry, it will not be treated as formal evidence.
Personal contact details supplied to the Committee will be removed from evidence before publication and from the copy deposited in the Archives. However, personal contact details will be retained by the Committee Office and used for specific purposes relating to the Committee's work, for instance to seek additional information or to send copies of the Committee's Report.
The Committee will invite some of those who submit written evidence to give oral evidence at Westminster. Transcripts of such evidence will be published.
