House of Commons - Science and Technology Committee: Clinical Trials - HC 104

House of Commons - Science and Technology Committee: Clinical Trials - HC 104
Author: Great Britain: Parliament: House of Commons: Science and Technology Committee
Publisher: The Stationery Office
Total Pages: 210
Release: 2013-09-17
Genre: Medical
ISBN: 9780215062321

Many of the trials taking place today are unregistered and unpublished, meaning that the information that they generate remains invisible to both the scientific community and the public. This undermines public trust, slowing the pace of medical advancement and potentially putting patients at risk. All trials conducted on NHS treatments-and all other trials receiving public funding-should be prospectively registered and their results published in a scientific journal. While the focus should be on implementing this change for future trials, the Government must also do what it can to ensure that historic trials are registered and published, particularly where they have been publically funded. The Government should also take steps to facilitate greater sharing of the raw data generated during a trial in a responsible and controlled way, with the knowledge and consent of patients. The report also draws attention to the recent fall in the number of trials taking place in the UK. It finds that the need for multiple governance approvals from participating NHS organisations remained the biggest barrier to setting up a UK trial, but that lack of public awareness was also a key issue. Recruiting participants can also be a challenge. The report calls on the Government to take its recommendations into account in ongoing discussions regarding the revision of European clinical trials legislation and in its response to the European Medicines Agency's consultation on the release of clinical trial data, which closes at the end of this month

HC 758 - Legacy-Parliament 2010-15

HC 758 - Legacy-Parliament 2010-15
Author: Great Britain. Parliament. House of Commons. Select Committee on Science and Technology
Publisher: The Stationery Office
Total Pages: 73
Release: 2015
Genre: Political Science
ISBN: 0215084225

Access to Non-Summary Clinical Trial Data for Research Purposes Under EU Law

Access to Non-Summary Clinical Trial Data for Research Purposes Under EU Law
Author: Daria Kim
Publisher: Springer Nature
Total Pages: 310
Release: 2021-10-19
Genre: Law
ISBN: 3030867781

This book draws a unique perspective on the regulation of access to clinical trial data as a case on research and knowledge externalities. Notwithstanding numerous potential benefits for medical research and public health, many jurisdictions have struggled to ensure access to clinical trial data, even at the level of the trial results. Pro-access policy initiatives have been strongly opposed by research-based drug companies arguing that mandatory data disclosure impedes their innovation incentives. Conventionally, access to test data has been approached from the perspective of transparency and research ethics. The book offers a complementary view and considers access to individual patient-level trial data for exploratory analysis as a matter of research and innovation policy. Such approach appears to be especially relevant in the data-driven economy where digital data constitutes a valuable economic resource. The study seeks to define how the rules of access to clinical trial data should be designed to reconcile the policy objectives of leveraging the research potential of data through secondary analysis, on the one hand, and protecting economic incentives of research-based drug companies, on the other hand. Overall, it is argued that the mainstream innovation-based justification for exclusive control over the outcomes of research and development can hardly rationalise trial sponsors’ control over primary data from trials. Instead, access to such data and its robust analysis should be prioritised.

House of Commons - Science and Technology Committee: Work of the European and UK Space Agencies - HC 253

House of Commons - Science and Technology Committee: Work of the European and UK Space Agencies - HC 253
Author: Great Britain: Parliament: House of Commons: Science and Technology Committee
Publisher: The Stationery Office
Total Pages: 122
Release: 2013-10-28
Genre: Science
ISBN: 9780215063243

The Committee heard much positive feedback about the work of the UK Space Agency since its creation in 2011. The UK's space sector is one of our economy's fastest growing sectors, with an average growth rate of almost 7.5%, and it has ambitions to increase its annual turnover to £40 billion by 2030. The report welcomes recent increases in the UK's commitments to the European Space Agency, but urged the UK Space Agency to strengthen UK influence within the European Space Agency by providing support for UK candidates applying for future director-level positions within the Agency. There are a number of exciting developments happening in the UK space sector, including the expansion of the European Space Agency's operations at Harwell, the establishment of the Satellite Applications Catapult and Major Tim Peake's upcoming mission to the International Space Station. With continued cross-party support, we hope to see this sector expand in line with its ambitions and continue to attract jobs and businesses to the UK

Communicating Climate Science - HC 254

Communicating Climate Science - HC 254
Author: Great Britain. Parliament. House of Commons. Select Committee on Science and Technology
Publisher: The Stationery Office
Total Pages: 242
Release: 2014-04-02
Genre: Science
ISBN: 0215070623

The Government is failing to clearly and effectively communicate climate science to the public. There is little evidence of co-ordination amongst Government, government agencies and public bodies on communicating climate science, despite various policies at national and regional level to mitigate and adapt to climate change. The mandate to act on climate can only be maintained if the electorate are convinced that the Government is acting on the basis of strong scientific evidence. Ministers therefore need to do more to demonstrate that is the case and consistently reflect the Government approach in all their communications, especially with the media. The report also criticises the BBC for its reporting on the issue. It points out that BBC News teams continue to make mistakes in their coverage of climate science by giving opinions and scientific fact the same weight. The BBC is called to develop clear editorial guidelines for all commentators and presenters on the facts of climate that should be used to challenge statements, from either side of the climate policy debate, that stray too far from the scientific facts. It is important that climate science is presented separately from any subsequent policy response. Government should work with the learned societies and national academies to develop a source of information on climate science that is discrete from policy delivery, comprehensible to the general public and responsive to both current developments and uncertainties in the science

HC 703 - Government Horizon Scanning

HC 703 - Government Horizon Scanning
Author: Great Britain. Parliament. House of Commons. Select Committee on Science and Technology
Publisher: The Stationery Office
Total Pages: 52
Release: 2014-05-04
Genre: Political Science
ISBN: 0215071840

The Government launched its new horizon scanning programme last July, stating that 'in a tight economic climate, it is more important than ever to have the best possible understanding of the world around us, and how that world is changing'. However, as it stands, the new programme is little more than an echo chamber for Government views. The new bodies that have been created consist entirely of Civil Servants, effectively excluding the vast pool of expertise that exists outside of government. The new programme does not even have a dedicated web presence to keep interested parties informed. The programme's failings are partially attributed to a lack of ministerial oversight. The Government also needs to recognise the potential role to be played in the new programme by the Government Office for Science (GO-Science), specifically the Foresight Unit. The relative lack of impact that the Foresight Unit has historically had on policy is largely a result of its non-central location in government. GO-Science is located in the Department of Business, Innovation and Skills (BIS). In contrast, the new horizon scanning programme is located in the Cabinet Office. In choosing to situate the new horizon scanning programme in the Cabinet Office, the Government has recognised the importance of location and has thereby acknowledged the strength of this argument. GO-Science should be relocated from BIS to the Cabinet Office, where it can play a more central role in the new programme and more effectively fulfill its role of ensuring that the best scientific evidence is utilised across government

HC 244 - National Health Screening

HC 244 - National Health Screening
Author: Great Britain. Parliament. House of Commons. Select Committee on Science and Technology
Publisher: The Stationery Office
Total Pages: 64
Release: 2014
Genre: Medical
ISBN: 0215078535

The risks and benefits of participating in screening programmes, for conditions and diseases like cancer, are not consistently communicated by either the NHS or private health care providers, the Science and Technology Committee has warned in a new report. It is calling on the Government to ensure that a standardised process to produce screening information is introduced and that better communications training is provided to health care professionals. A recently revised breast cancer screening leaflet for the 50-70 age group - with its more explicit focus on helping women make an 'informed choice' about whether screening is right for them - marks a step in the right direction. However, the inquiry found that the principles followed to revise this leaflet have not been applied to the communications developed by other NHS screening programmes. The Committee recommends that steps are immediately taken by the Government's advisor on screening, the UK National Screening Committee (UK NSC), to devise and implement a standard process for producing information that facilitates informed choice. It also recommends a clarification of what 'informed choice' means for potential screening participants so that different screening programmes can be more effectively evaluated on their delivery of it. MPs are also calling on the Office for National Statistics to validate the statistics presented in NHS screening information to resolve disagreement and confusion over their accuracy.

HC 734 - Current and Future Uses of Biometric Data and Technologies

HC 734 - Current and Future Uses of Biometric Data and Technologies
Author: Great Britain. Parliament. House of Commons. Select Committee on Science and Technology
Publisher: The Stationery Office
Total Pages: 53
Release: 2015
Genre: Law
ISBN: 0215083849

In its broadest sense, biometrics is the measurement and analysis of a biological characteristic (fingerprints, iris patterns, retinas, face or hand geometry) or a behavioural characteristic (voice, gait or signature). Biometric technologies use these characteristics to identify individuals automatically. Unlike identity documents or passwords, biometrics cannot be lost or forgotten since they are a part of the user and are always present at the time of identification. They are also difficult, though not impossible, to forge or share. Three future trends in the application of biometrics were identified during the inquiry: (i) the growth of unsupervised biometric systems, accessed via mobile devices, which verify identity; (ii) the proliferation of "second-generation" biometric technologies that can authenticate individuals covertly; (iii) and the linking of biometric data with other types of 'big data' as part of efforts to profile individuals. Each of these trends introduces risks and benefits to individuals, to the state and to society as a whole. They also raise important ethical and legal questions relating to privacy and autonomy. The Committee are not convinced that the Government has addressed these questions, nor are they satisfied that it has looked ahead and considered how the risks and benefits of biometrics will be managed and communicated to the public.

Law and the Regulation of Scientific Research

Law and the Regulation of Scientific Research
Author: Mark Davies
Publisher: Taylor & Francis
Total Pages: 304
Release: 2022-08-12
Genre: Law
ISBN: 0429959958

Scientific research is fundamental to addressing issues of great importance to the development of human knowledge. Scientific research fuels advances in medicine, technology and other areas important to society and has to be credible, trustworthy and able to command confidence in the face of inevitable uncertainties. Scientific researchers must be trusted and respected when they engage with knowledge acquisition and dissemination and as ethical guardians in their education and training roles of future generations of researchers. The core values of scientific research transcend disciplinary and national boundaries and approaches to the organisation and oversight of research systems can impact significantly upon the ethics and conduct of researchers. This book draws upon legal expertise to critically analyse issues of regulation, conduct and ethics at the important interface between scientific research and regulatory and legal environments. In so doing it aims to contribute important additional perspectives to the existing literature. Case studies are engaged with to assist with the critical analysis of the current position and the consideration of future possibilities. The book will be of interest to academics in the fields of science, law and policy; science and law students; and scientific researchers at more advanced stages of their careers. Research professionals in government and the private sector and legal practitioners with interests in the regulation of research should also find the work of interest.

HC 469 - Science in Emergencies: UK Lessons from Ebola

HC 469 - Science in Emergencies: UK Lessons from Ebola
Author: Great Britain: Parliament: House of Commons: Science and Technology Committee
Publisher: The Stationery Office
Total Pages: 49
Release: 2016
Genre: Medical
ISBN: 0215090861

Ebola is a rare and deadly disease. Since late 2013, West Africa has experienced the largest Ebola outbreak ever recorded. We pay tribute to all those who worked tirelessly to tackle this outbreak, some of whom gave evidence to this inquiry, and many of whom continue working to avert similar crises in the future. We also commend the Government on its leading contribution to the fight against Ebola, and the financial, and personnel, commitments that it made, from constructing and staffing Ebola treatment centres in Sierra Leone to deploying troops, helicopters, aircrew and an aviation support ship to provide much needed logistical support. Examples of UK successes in tackling Ebola, however, must not allow complacency to set in. Despite this impressive deployment of resources to combat Ebola in Sierra Leone, the UK response - like the international response - was undermined by systemic delay. The biggest lesson that must be learnt from this outbreak of Ebola is that even minor delays in responding cost lives. Yet delays were evident at every stage of our response, from escalating Public Health England's disease surveillance data to those with the capacity to act, to convening a Scientific Advisory Group for Emergencies which failed to be established until October 2014, three months after 'Cobra', the Government's emergency response committee, first met. In the absence of established mechanisms, ad hoc approaches emerged to fill the gaps. Inevitably, these were not as effective, or as targeted, as they should have been.