essay

The Duty to Share Patient Information

The duty to share information can be as important as the duty to protect patient confidentiality. Vince Kuraitis and Leslie Kelly Hall released a report discussing in depth topics that concern all of us. They have emphasised and pointed out two things that are missing when talking about data sharing: The explicit recognition of a corollary duty to share patient information with other providers when doing so is the patient’s interest, and a recognition that there is potential tension between the duty to protect patient confidentiality/privacy and the duty to share – with minimal guidance on how to resolve the tension. Their article refers to and discusses three main topics: First of all, Vince and Leslie talk about the recent recognition in the UK, giving us examples from one long-awaited study commissioned by the Department of Health. They have identified the key discoveries from The Information Governance Review Report (Caldicott Review), citing in the essay: …safe and appropriate sharing in the interests of the individual’s direct care should be the rule, not the exception. Caldicott review initial report had suggested 6 acknowledged principles for information sharing, but now the recognition of an explicit duty to share patient information was added […]

Write for Data Sharing Essay Competition: Winning Entry by Eilish Wells

The following is the winning essay from the DNAdigest write for data sharing essay competition. The essay is written by Eilish Wells. What is the current state of data sharing in 2014 and how can we encourage best practices for ethical and efficient data sharing? by Eilish Wells Data sharing has become the topic of heavy debate, around ethical, legal and funding issues; particularly concerning the sharing of patient records from the National Health Service (NHS). Data Sharing is a concept that has received noticeable support from many sources and it is often considered a crucial tool to further scientific understanding in every field. It has even been described as the ‘fourth paradigm: data intensive scientific discovery’ (1) and, if correctly used, has the potential to unlock many questions that have so far eluded researchers. January 2013 saw the collaboration of seventy organisations to form the Global Alliance for Genetics and Health (GAGH). The alliance now has 148 members and is an international non-profit organisation with an aim to ‘tackle the challenges of genomic and clinical data sharing’ and ‘to make it possible to share and interpret this wealth of information’. (2) GAGH was initially driven by the fall in […]

Honourable Mention: Clara Podmore Data Sharing Essay

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 […]

Andrew Magee

Honourable Mention: Andrew Magee

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 DNA Digest Write for Data Sharing competition.

The DNAdigest Write For Data Sharing Essay Competition

We are pleased to launch our first essay competition, we are looking for entries of 800 words in answer to one of our questions in the theme of data sharing in research. The winner will receive a £200 cash prize and finalists will have their work published on the DNA digest website, as well as honourable mentions. Please choose from one of these questions more information and helpful tips for the questions are on the essay competition page. 1) What is the current state of data sharing in 2014 and how can we encourage best practices for ethical and efficient data sharing? 2) Describe a time in your research when data sharing had a positive impact or when lack of data sharing had a negative impact on your research. 3) Describe a time when data sharing has had a negative impact on your research? 4) How do you imagine the future of data sharing in healthcare or research? The judging panel includes Dr Adam Harman-Clarke from Geneix, Dauda Bappa Project Manager from StoreGene and Amy Marquis curator at the Fitzwilliam Who will be looking for articles with the best written style, insight of content and the societal relevance of the writing. Prize: £200 Entries […]

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