Nature article: Legal confusion threatens to slow data science

http://www.nature.com/news/legal-confusion-threatens-to-slow-data-science-1.20359

Researcher who spent months chasing permission to republish online data sets urges others to read up on the law.

03 August 2016

"... some of the data sets that he wanted to use had clear licences ­— and some of these prevented unrestricted redistribution, but others did not. The most frustrating part of his project, he says, was the feeling that good data were going to waste because their creators could not clarify whether he could republish them."

Article tools

Nature article: Data sharing: Access all areas

Data sharing: Access all areas

• Brian Owens

Nature

 

533,

 

S71–S72

 

(12 May 2016)

 

doi:10.1038/533S71a

Published online

11 May 2016

http://rdcu.be/id8u

Advocates say that open science will be good for innovation. One neuroscience institute plans to put that to the test.

"Over the next five years, McGill University's Montreal Neurological Institute and Hospital (the Neuro) in Canada will conduct a radical experiment in open science. It will make all results, data and publications from its research free to access, will require collaborators to do the same, and, perhaps most surprisingly, will not pursue patents on any of its discoveries...."

Nature: Mobile-phone health apps deliver data bounty

Smartphone programs allow researchers to recruit large numbers of participants
and monitor them in real time.

21 March 2016

http://www.nature.com/news/mobile-phone-health-apps-deliver-data-bounty-1.19622 

Journal Editors to Researchers: show everyone your clinical data

"...last Wednesday, the editors of the leading medical journals around the world made a proposal that could change medical science forever. They said that researchers would have to publicly share the data gathered in their clinical studies as a condition of publishing the results in the journals. This idea is now out for public comment".

See:
http://www.npr.org/sections/health-shots/2016/01/26/464010931/journal-editors-to-researchers-show-everyone-your-clinical-data  

How open data can improve medicine

How open data can improve medicine

A study arguing an antidepressant isn’t safe for teens has researchers calling for open data:
http://www.macleans.ca/society/how-open-data-can-improve-medicine/  

Blog post: Open Data is good because...

Why should we advocate for open data? What benefits does it bring?

Belinda Weaver writes on the many benefits of open data for the Australasian Open Access Support Group blog at http://aoasg.org.au/2015/09/11/open-data-is-good-because/ 

Nature article: The DNA of a nation

The DNA of a nation - http://rdcu.be/dTla

 

The United Kingdom aims to sequence 100,000 human genomes by 2017. But screening them for disease-causing variants will require innovative software [and great data management].

"...The NHS already holds extensive clinical information on individuals, and pairing this with detailed genomic data will enable powerful insights into the links between medicine and genetics. Evidence that whole-genome interpretation can help in a wide range of disorders is mounting², and in the long term, Bell says, the goal is to make whole genomes part of regular NHS health records."

What is FaceBase?

From FaceBase https://www.facebase.org/

"FaceBase was initially launched in 2009 with eleven research and technology grants. The first phase from 2009 through 2014 focused on the middle region of the human face and the genetics related to developmental disorders such as cleft lip and palate. The data from this first band of projects created an huge database for the head and skull and craniofacial development available free to the public.

In 2014, the second 5-year phase of FaceBase launched with ISI's Informatics Division manning the Coordinating Center (known as the Hub) and ten new projects expanding FaceBase's domain to include more regions. The Hub is also developing new systems and tools including more complex yet intuitive search capabilities and greater detail and analysis in viewing data."

http://www.nature.com/news/data-overprotection-1.17825?WT.ec_id=NATURE-20150625

Data overprotection

Draft European rules governing privacy threaten to hamper medical research.

23 June 2015

"The regulations proposed in 2012 by the commission allow the use of personal data only after an individual has given “specific, informed and explicit” consent. It is, after all, directed primarily at potential misuse of data gathered at websites or apps such as Facebook. But it made exceptions for health research because it recognized that such work depends on broad models of consent in which participants can agree for their data to be used in a variety of research studies, and that — subject to suitable safeguards — the data can be stored for future use.

Parliamentary amendments agreed last year changed the emphasis, and in doing so removed the exemption for research. If accepted, the amendments would require consent from participants for each new study. That would impede research."

NIH Issues Genomic Data Sharing Rules

Updated guidelines expand upon existing policy to include more kinds of data. 

FLICKR, YNSEGathering and sharing human genomic data is crucial to medical advances. But making such data available also raises concerns about participant privacy and consent.

A final Genomic Data Sharing (GDS) policyannounced by the National Institutes of Health (NIH) yesterday (August 27) replaces the current genome-wide association study (GWAS) data policy, which was instituted in 2007, expanding upon it to include more data types. “The increasing volume and complexity of genomic data creates an urgent need for alternative data management and analysis mechanisms,” the NIH policy-making team wrote inNature Genetics yesterday (August 27). Recent studies have also demonstrated that individual participants’ identities can be deduced from aggregate, anonymized data sets such as the 1,000 Genomes Project.

http://www.the-scientist.com//?articles.view/articleNo/40895/title/NIH-Issues-Genomic-Data-Sharing-Rules/