Routes for breaching and protecting genetic privacy

We are entering the era of ubiquitous genetic information for research, clinical care, and personal curiosity. Sharing these datasets is vital for rapid progress in understanding the genetic basis of human diseases. However, one growing concern is the ability to protect the genetic privacy of the data originators. Here, we technically map threats to genetic privacy and discuss potential mitigation strategies for privacy-preserving dissemination of genetic data.Comment: Draft for comment

UK Strategy for Data Resources for Social and Economic Research 2009-2012

In the United Kingdom a group has been established to help ensure that the right data resources are created and made available to help inform the important choices that decision makers need to make. The group is the UK Data Forum. The members of the Forum come from national research councils, chief statisticians and researchers within government, the national statistics office, national library and national archives, devolved administrations, sub-national bodies and other organisations in the private, public and not for profit sectors. The current Strategy for Data Resources for Social and Economic Research: 2009-2012 sets out practical actions on areas for collaboration and the development of cross-cutting facilities. The strategy is owned by the members of the Forum and represents a statement of intent by them. A central feature of the current strategy, and one of the strongest themes from the consultation undertaken to inform its development, is the internationalisation of the research agenda. Actions in the strategy include initiatives to make collaborative agreements with other agencies within and outside the UK at national, European Union and international levels. The Forum believes that the potential for close working with colleagues in the UK and Germany is likely to be especially valuable.Sharing the strategy with you on this site is a first step in encouraging what we hope will be a deep and fruitful relationship in the future.

Summary care record early adopter programme: an independent evaluation by University College London.

Benefits The main potential benefit of the SCR is considered to be in emergency and unscheduled care settings, especially for people who are unconscious, confused, unsure of their medical details, or unable to communicate effectively in English. Other benefits may include improved efficiency of care and avoidance of hospital admission, but it is too early for potential benefits to be verified or quantified. Progress As of end April 2008, the SCR of 153,188 patients in the first two Early Adopter sites (Bolton and Bury) had been created. A total of 614,052 patients in four Early Adopter sites had been sent a letter informing them of the programme and their choices for opting out of having a SCR. Staff attitudes and usage The evaluation found that many NHS staff in Early Adopter sites (which had been selected partly for their keenness to innovate in ICT) were enthusiastic about the SCR and keen to see it up and running, but a significant minority of GPs had chosen not to participate in the programme and others had deferred participation until data quality improvement work was completed. Whilst 80 per cent of patients interviewed were either positive about the idea of having a SCR or ?did not mind?, others were strongly opposed ?on principle?. Staff who had attempted to use the SCR when caring for patients felt that the current version was technically immature (describing it as ?clunky? and ?complicated?), and were looking forward to a more definitive version of the technology. A comparable technology (the Emergency Care Summary) introduced in Scotland two years ago is now working well, and over a million records have been accessed in emergency and out-of-hours care. Patient attitudes and awareness Having a SCR is optional (people may opt out if they wish, though fewer than one per cent of people in Early Adopter sites have done so) and technical security is said to be high via a system of password protection and strict access controls. Nevertheless, the evaluation showed that recent stories about data loss by government and NHS organisations had raised concerns amongst both staff and patients that human fallibility could potentially jeopardise the operational security of the system. Despite an extensive information programme to inform the public in Early Adopter sites about the SCR, many patients interviewed by the UCL team were not aware of the programme at all. This raises important questions about the ethics of an ?implied consent? model for creating the SCR. The evaluation recommended that the developers of the SCR should consider a model in which the patient is asked for ?consent to view? whenever a member of staff wishes to access their record. Not a single patient interviewed in the evaluation was confident that the SCR would be 100 per cent secure, but they were philosophical about the risks of security breaches. Typically, people said that the potential benefit of a doctor having access to key medical details in an emergency outweighed the small but real risk of data loss due to human or technical error. Even patients whose medical record contained potentially sensitive data such as mental health problems, HIV or drug use were often (though not always) keen to have a SCR and generally trusted NHS staff to treat sensitive data appropriately. However, they and many other NHS patients wanted to be able to control which staff members were allowed to access their record at the point of care. Some doctors, nurses and receptionists, it seems, are trusted to view a person?s SCR, whereas others are not, and this is a decision which patients would like to make in real time

Innovate and prosper: ensuring Australia's future competitiveness through university-industry collaboration

Executive summary The continuation of Australia’s economic growth is under threat. In order to sustain the levels of prosperity we have previously experienced, we have to build on our competitive edge in key industries to remain globally competitive. Alongside these developments, Australia’s higher education system is under increased pressure to become more productive and develop courses that address employability. Innovation represents the most reliable and sustainable solution to transition into a high value, high wage economy. Yet Australia ranks 29th out of 30 in the Organisation for Economic Co-operation and Development (OECD) in terms of the proportion of large businesses and small to medium enterprises (SMEs) collaborating with higher education and public research institutions on innovation.   This report acts as the next level of detail to publications such as the Department of Industry’s Boosting the Commercial Returns from Research report and the Business Council of Australia’s Building Australia’s Comparative Advantages, which have highlighted Australia’s poor performance in collaborative innovation. We present five recommendations that are a call to action to universities, industry and Government to take the necessary steps to build an innovation economy. They are not a call for additional funding from Government, rather a more effective way of using our existing resources. PricewaterhouseCoopers (PwC) have engaged with leading figures from industry, including the Australian Industry Group (Ai Group), and partnered with the ATN to develop this five point action plan for Government, the university sector and industry 5 that will provide incentives and impetus for collaboration. Our recommendations include: Rebalance the national research agenda to underpin Australia\u27s economy and future prosperity Create incentives for university-industry collaboration Train researchers for diverse careers Enhance career mobility between industry, academia and government Provide incentives for co-investment in research infrastructure between universities, industry and state and federal government Each recommendation contains a number of practical strategies for consideration by Government, universities and industry. The hope is that the report will encourage dialogue between the three groups and prompt bold policy changes in the coming 12 months and beyond. &nbsp

Volume 5 #2 Full Issue

Volume 5 #2 Full Issu