Month: May 2016

Genealogy and genomics take their vows

Guest post by Brianne Kirkpatrick, MS, LGC, genetic counselor. Genomics research and genealogy have been dating for a few years now, and it seems that 2015 was the year they finally took their vows. With the growth of interest in tracing familial lineages — genealogy being the second-most favorite hobby reported by Americans — the technologies created for searching historical records of families are available instantly, with a mouse click or a screen swipe. Engagement in family history collection and availability of commercial DNA testing for ancestry are galvanizing the general public alongside the growth of genomics databases in research and industry. Growing interest in uncovering ethnic roots and genetic family has opened the doors for novel research projects, leading to a new cohort of willing and able participants. Some readers might already be familiar with the DNA.Land project, a non-profit partnership between New York Genome Center and Columbia University. DNA.Land is accepting raw genotype data files from participants who were able to obtain these files by purchasing commercial ancestry testing. Unaffiliated with the testing companies themselves, DNA.Land provides a re-analysis of the computerized genotype data and provides additional tools, such as a participant-matching database and ethnicity estimate. This research project provides an opportunity […]

Your DNA – your say! What do people think about sharing their genomic data?

It is really important to find out what genomic data donors all over the world think about sharing their data. Do they actually want it to be shared, and if yes, with whom? TORONTO, CANADA (May 24, 2016) — The Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus have launched a new project to explore global public attitudes and beliefs around the sharing of genetic information. This has become increasingly urgent as we enter a new era of genomic medicine in which unique ethical and moral questions arise, at both the personal and political levels. It also raises questions about the commercial use of people’s genetic information. Every day, DNA and medical data are collected at clinics and research labs around the globe. To be truly informative, all of the data points — and there are millions per person — must be integrated into larger repositories in order to facilitate comparison across millions of individuals. Doing so requires individuals to give permission for their DNA and medical data to be donated for the purposes of research. Such sharing will often mean data leave the institutions where they were collected, and travel across the Internet to researchers […]

Veterans Affairs Precision Oncology Project

Interview with Louis Fiore, doctor, scientist, manager, innovator at the Department of Veterans Affairs (VA) in Boston Massachusetts, Executive Director of the Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC). Louis will be speaking about the Precision Oncology Project at BioData World Congress USA 2016. 1. Could you please tell us about your background and your role at VA? I’ve been working for VA for almost 36 years. The department of VA takes care of approximately 20 million people, who served in the Armed Forces and are now retired. VA has a network of more than 150 hospitals across the country, they provide all types of healthcare services to veterans. VA has three missions: 1) care for veterans; 2) educate the next generation of healthcare providers; 3) provide research opportunities to improve healthcare of veterans first, and of the greater community as well. The group that I run, MAVERIC, has over 140 employees and works across four divisions: epidemiology and data mining, clinical trials, biobanking, and informatics. We have three national profile projects: Million Veteran Program (MVP), Point of Care Clinical Trial (POCCT) program, and Precision Oncology Program (POP). 2) At BioData World Congress USA 2016 you will be presenting […]

A better cancer treatment for children: we can create it together!

Children with cancer often don’t have access to innovative drugs in the way adult patients do. Why? Today we talk to Cesare Spadoni, founder of the aPODD foundation (Accelerating Paediatric Oncology Drug Development), about the current situation with childhood cancer and how it can be changed. 1. What is your background and how did you get involved with the project? I am a scientist and a drug development professional that has been working in business development roles for the past 12 years. But I am also a parent that one day heard the most terrifying words any parent may hear. My daughter was diagnosed with cancer at the age of three. After a year-long struggle with the disease she passed away in my arms. This was the time I resolved to do something for children with cancer. 2. What is the aim of your project and how did it start? The major problem facing children with aggressive forms of cancer is the lack of access to innovative treatment options. Children with cancer are generally treated with radiotherapy and old cytotoxic drugs that were approved 40-50 years ago in some cases. Sick children do not have access to the most innovative […]

Objections to data sharing don’t stand up to scrutiny

Who’s afraid of Open Date: Scientists’ objections to data sharing don’t stand up to scrutiny. Many scientists are still resisting  data sharing calls. Whilst their concerns should be taken seriously, Dorothy Bishop doesn’t think the objections withstand scrutiny. Concerns about being scooped are frequently cited, but are seldom justified. If we move to a situation where a dataset is a publication, then the original researcher will get credit every time someone else uses the dataset. And in general, having more than one person doing an analysis is an important safeguard for science. I was at a small conference last year, catching up on gossip over drinks, and somehow the topic moved on to journals, and the pros and cons of publishing in different outlets. I was doing my best to advocate for open access, and to challenge the obsession with journal impact factors. I was getting the usual stuff about how early-career scientists couldn’t hope to have a career unless they had papers in Nature and Science, but then the conversation took an interesting turn. “Anyhow,” said eminent Professor X. “One of my postdocs had a really bad experience with a PLOS journal.” Everyone was agog. Nothing better at conference drinks than a new twist on […]

Enabling the Effective Sharing of Clinical Data

This blog post was written for DNAdigest by Mathias Astell, Marketing Manager for Nature Publishing Group & Iain Hrynaszkiewicz Head of Data and HSS Publishing for Nature Publishing Group The benefits of sharing data generated by researchers have long been understood to be of great value to science (as exemplified by this British Medical Journal piece from 1994). And over recent years there has been a rapid increase in the ability to share and access research data – as can be seen in the rise of data journals (such as Scientific Data and Gigascience), the increase in research data repositories (both general and subject-specific), and the establishment of data sharing policies around the world. However, in the medical world large amounts of clinical research can go unpublished and a large number of clinical trials go unregistered (almost 40% according to one study) – meaning we only have a partial account of what data have been gathered in medical research, let alone data that may be available to others. On top of this problem of non-publication, there is also evidence that reporting of research in medical literature favours positive results (as can be seen in this study and this one). All of which […]