How do you imagine the future of data sharing in healthcare or research? This post was written by Clara Podmore as one of the honorable mentions for our data sharing essay competitions. Since the discovery of the structure of DNA in 1953 by Watson and Crick, research in the field of human genetics has progressed at an incredible pace and is now clearly impacting the way medicine is being practiced and taught. The vision is that better understanding of genetics will not only allow identification of individuals at risk of developing a given disease and hence enable prevention, but that it will also allow personalisation of medical care to patients. For example, treatments will be prescribed more appropriately to patients based on their genetic information, hence improving drug response while decreasing the number or risk of side effects of medication, such as potentially fatal drug reactions. In addition, the identification of mutations, which are faults in DNA which may lead to disease, will provide a better understanding of the disease process and hence provide new targets for drug development. In this present time, when obtaining a DNA sample is a fairly non-invasive procedure and can be done simply by taking […]
The Makings of a Meta-Analysis or: How I Wasted Dozens of Hours Obtaining Publicly Available Data This post was written by Andrew Magee as one of the honorable mentions for our data sharing essay competitions. Phylogenies are estimates of the genealogical relationships among species, and are increasingly critical to research in a vast and rapidly expanding number of scientific disciplines, including evolutionary and conservation biology, comparative genomics, medicine and epidemiology. The process of estimating phylogenies from genetic sequence data is technically demanding and computationally intensive: many modern estimation techniques rely on Bayesian Markov chain Monte Carlo (MCMC) methods, which can require a great deal of expertise to apply and hundreds or thousands of CPU hours to perform. Given their incredible utility and the effort required to estimate them, it is crucial that phylogenetic data are readily available to the scientific community. There have been numerous initiatives to promote the permanence of and increase access to phylogenetic data, among these are strict journal and publisher policies and even a government mandate for publicly funded projects. Stated reasons for such policies are variable, but reproducibility and accountability, foundational ideas of science, are common. Still, despite policies mandating data sharing, and a clear […]
The recent paper, Big Desire to Share Big Health Data: A Shift in Consumer Attitudes toward Personal Health Information, exploring the desire (or lack of desire) to share big health data provides a lot of encouragement for the future of health data sharing. The paper, co-authored by K. Thomas Pickard and Melanie Swan, summarises consumer attitudes towards the sharing of personal data, taken from a survey. The online survey is ongoing and takes only 5 minutes to fill out. The findings suggest that attitudes towards data sharing are changing for the positive with more people willing to share a variety of data relating to health. Even more importantly the paper indicates that the way to increase this positive attitude towards data sharing is through education. It appears that it is those with higher levels of education who are more open to data sharing possibilities. This further highlights the already prevalent need to increase science literacy within the wider public. Another key theme, drawn out by K. Thomas Pickard in his blog, is the need to develop models to encourage data sharing and which connect consumers to their data. We have seen in the Genetics Clinic of the Future that patients represent a key aspect of the […]
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Incredibly, over £8 million has been raised for Cancer Research in just 6 days after the ‘no-make-up-selfie’ went viral. It is an amazing example of the power of sharing and highlights how much of a difference can be made when the public are empowered. These are ideals that need to be incorporated more thoroughly into the scientific research itself – not just the funding for the research. If you have somehow missed out on the trend it is an incredibly simple and effective process whereby individuals post a photo of their make-up-less face, a screenshot of their text donating £3 to charity, and publicly nominate a few selected friends to do the same. It follows the same format as a number of other recent viral campaigns, perhaps most (in)famously ‘neknominations’ a craze which swept the Facebook newsfeeds of university students everywhere. I think we can all agree that the viral selfie is just a tad more worthwhile. Despite the enormous sums of money raised by the viral campaign it is not without criticism. Arguably it is a great shame that in todays society it is viewed as brave for a woman to reveal her make-up-less face. This is a sight which […]
Almost two decades ago The Bermuda Principles were set up to reconcile differences between public and private sector interests in relation to human genome sequencing and genetics. The idea of a commons obeying these principles is already prevalent in genomics but we are still learning how to share big data ethically. We need to build upon this existing commons to continue to save lives. A BRCA commons, in line with the established Bermuda Principles, would lower the cost of healthcare, accelerate innovation, and save lives through more efficient diagnostic tests. Ethical data sharing enables better ways to screen for, treat and prevent hereditary breast and ovarian cancer. Read the full article on why we need a BRCA commons here.
The graphic below, ‘The Server Room’ visualises the processes and challenges associated with sharing our data. It’s been a bit of a wait for the final instalment of output from the Genetics Clinic of the Future – the interdisciplinary conference run by UMC Utrecht and The Responsible Innovation Collective which took place this January. The fifth and final poster specifically explores data sharing and how we can promote an open data sharing environment. Professor Anthony Brookes led the session, suggesting that the first step toward open ethical data sharing is to share the ‘existence’ of the data to promote the sharing of the ‘substance’. We will be exploring this concept of Data Discovery further at our hack day event Saturday April 5th. Take a look at the full poster to explore the theme in more detail. A higher resolution image can be found here. All the graphics from the Genetics Clinic of the Future were produced by ©Ruben Maalman Illustrations.