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January 15, 2018


Welcome to the Genomics in Society Digest

Genomics in Society: Genomics and its related Ethical, Economic, Environmental, Legal and Social aspects.
This news digest is published by Genomics in Society at Genome Alberta. Feel free to forward to your colleagues.

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Representing a “revolution”: how the popular press has portrayed personalized medicine

Alessandro R Marcon, Mark Bieber, and Timothy Caulfield investigated the portrayal of “personalized” and “precision” medicine (PM) in North American news over the past decade. Content analysis of print and online news was conducted to determine how PM has been defined and to identify the frames used to discuss PM, including associated topics, benefits, and concerns.
Source: Genetics in Medicine

University wrong to accept A&W donation

“Follow the money” generally is viewed as a way to track down corruption or underhanded dealings. Whether or not the source of the money really is a problem doesn’t always matter because perception counts. Early in December the University of Saskatchewan’s College of Agriculture and Bioresources announced a $5 million donation from A&W to go toward the Livestock and Forage Centre of Excellence. The U of S is learning that perception counts as agrologist Bob Evans thinks that accepting the donation was a mistake.
Source: Western Producer

Weatherwatch: scientists develop 'speed breeding' to feed rising population

Selecting for hardy or specialized seed varieties by growing crops a season at a time is time consuming and does not always produce the desired results. There is also a concern that the climate is changing faster than plant varieties can be made to adapt. Speed breeding can grow up to six crops a year and if used in conjunction with new genomics technology results can be faster and more precise.
Source: The Guardian and Science News

Scientist discusses working on food evolution movie

Alison Van Eenennaam is a geneticist at the University of California and is part of a Genome Alberta Research Oversight Committee. She was one of the scientists featured in the full length documentary Food Evolution. In this podcast she talks about being part of the production and about public attitudes towards genetically modified organisms.
Source: Brownfield Ag News (You can read more about the movie on our website and hear what people thought about it after a screening in Edmonton).

Helping stem cells find a new home

Stem cells can treat hundreds of diseases, but transplants often don't take root in the body. One drug could help fix the problem thanks to researchers at the University of Toronto.
Source: Research2Reality

Do you belong to you?

A recent court case is trying to determine whether we own our own DNA and the information it contains. The answer has implications for research, privacy, and commerce. It may even make you think twice about what you do with your used Tim Horton’s coffee cup.
Source: Genome Magazine

Grant reviewers ‘biased’ against female scientists, study finds

Researchers from McGill and Laval have found that women are less likely to be awarded research funding when applications are assessed primarily on the background of the principal investigator rather than the merits of the science.
Source: Times Higher Education

Women and men in STEM often at odds over workplace equity

A new study from the PEW shows that among other things, diversity within the STEM workforce varies widely, women see more gender disparity, and that American STEM education is average compared to other developed countries. The U.S. based study used a broad definition of STEM and was conducted in the summer of 2017, before most of the high profile sexual harassment charges made major headlines.
Source: PEW Research Centre

WATCH: The Lifeblood of Scientific Innovation

By the time research breakthroughs make it into our daily lives a lot of basic groundwork took place. Some scientists are worried that the trend requiring industry involvement in research funding will harm basic research.
Source: Research2Reality

Proposed outcome measures for state public health genomics program

The mantra of what gets measured gets done could be put to the test if public health genomics programs have to produce metric data. There are very few requirements for such information and this paper proposes performance objectives to asses genomic medicine programs.
Source: Genetics in Medicine

Investing in medical research yields healthy returns

Governments, charities, and the public invest significant sums of money into medical research. The peer-reviewed 'What’s it worth?' study shows that this investment delivers outstanding benefits for the economy, as well as for people’s health.
Source: Wellcome

A Big Brother future for science publishing?

Richard Smith says the most powerful force in science publishing is Elsevier and its 2,500 journals. Smith is the past editor of BMJ and he says that the power of Elsevier is reaching far beyond the journals it publishes. It lies in its data.
Source: BMJ

Feature: Gene Editing News Up arrow

You may already be immune to CRISPR

Because CRISPR technology relies on a bacterial protein some people may already be immune to it. Not great news for those viewing CRISPR as the latest tool for creating new therapies, but there appears to be many ways to deal with the problem.
Source: The Atlantic

Gene therapy comes of age

In a recent Tweet, well-known scientist and author Eric Topol called this article “the best review of gene therapy yet published”. The authors look back at the early work that led to gene therapy, outline current technologies, and tackle the challenges in getting these new therapies into clinical practice.
Source: Science Magazine

Researchers use AI to improve accuracy of gene editing with CRISPR

A collaboration between computer scientists and biologists from research institutions is developing a set of computational tools that increase the efficiency and accuracy of CRISPR.
Source: Microsoft blog

The gene-editing conversation

Matthew Nisbet is Editor-in-Chief of the journal Environmental Communication and a professor of communication, public policy, and urban affairs at Northeastern University. In this article he says that discussions about altering the genetic makeup of living things will need to include scientists, journalists, philanthropists, and input from the humanities, social sciences, and even creative arts. (and once again Jennifer Doudna’s ‘nightmare’ appears as a catalyst for the discussion)
Source: American Scientist

Papers & Features Up arrow

MSRP for new gene therapy

In mid-December the U.S. Food and Drug Administration approved a new gene therapy. Luxturna was “approved for the treatment of patients with confirmed biallelic RPE65 mutation-associated retinal dystrophy”, an inherited vision loss affecting a few thousand people in the United States. The Foundation for Fighting Blindness estimates about 200 people in Canada have the condition. The one time treatment will fix a mutation of the RPE65 gene and it could pave the way for approval of other such genetic fixes. At the time of the announcement, FDA Commissioner Scott Gottlieb said he believes “gene therapy will become a mainstay in treating, and maybe curing, many of our most devastating and intractable illnesses”.

Gene therapy is a new technology and there is no playbook for the pharmaceutical industry to follow so it there was a great deal of speculation about much the treatment would cost.

When the approval was announced some of the stories got lost in the holiday media mix but when once the New Year had passed, sticker shock set in when the bill came in at $850,000 for the treatment. Or $425,000 per eye.

At the time the therapy was approved there was some speculation that it would cost a million dollars but the lower than expected cost does not exactly set the minds at ease for insurers or patients. The MIT Technology Review said the cost should not “freak you out”. Unlike many treatments (genetic or not) this is a one time fix and not a long term cost for ongoing treatments. Wired magazine was on hand for the annual JP Morgan Health Care Conference last week in San Francisco and the new treatment was the buzz of the conference. The article describes how some of the discussion was around how Luxturna in particular and gene therapy in general is forcing a long hard look at how the cost will be covered. Development is expensive, it is generally a one-shot treatment, and the number of patients is limited, which is not the general model health insurance is built around.

Not surprisingly the price has generated a lot of attention and ideas on how the cost could be covered. The Fierce Pharma website will give you a good introduction to the options but not everyone is convinced the price is warranted. Forbes magazine and Reuters say the non-profit Institute for Clinical Evaluation and Review thinks the price is twice as much as it needs to be. Luxturna may soon have company at the top of the gene therapy pricing list. A $700,00 USd / €594,000 drug called Strimvelis has been recommended by the National Institute for Health and Care Excellence in the UK. The final draft guidance is for treatment of an ultra-rare inherited immune deficiency condition often called ‘bubble baby syndrome’.

A final thought on the drug making headlines for its price and its ability to bring about a one-stop cure for at least one form of blindness. The web page for Luxturna is as about as ordinary a page as there is for many drugs with a listing of the possible side effects including eye infections and a permanent decline in visual acuity.

Events Up arrow

Visit Genome Alberta's extensive Events Calendar on our website at GenomeAlberta.ca. Connect With Us to sign up for our newsletters and see the Calendar of Events.

TEC Health Accelerator – Information Session

The goal of the TEC Health Accelerator (HA) is to position Alberta to be a national leader in health innovation. We do this by providing health technology companies with expert services and facilitating access to industry, capital and health system engagement. Join us as we explain what the TEC HA can do for you, as a health entrepreneur, researcher, funder or service provider. 

In this session, you will:

  • Learn the top five things the TEC HA can do for you
  • Be shown real-world examples of health tech companies the TEC HA has helped
  • Learn how to access TEC HA services

The TEC HA is run by TEC Edmonton, in partnership with Innovate Calgary, and funded by NRC, Alberta Ministry of Innovation & Advanced Education, Alberta Innovates, and EEDC.

When: January 23, 2018, 11am - 2pm, including a networking lunch
Where: W21C Research and Innovation Centre, University of Calgary - TRW Building, 3280 Hospital Dr NW, Calgary

To register, please click here.

DOE JGI Genomics of Energy & Environment Meeting

Any and all researchers and students pursuing frontier energy and environmental genomics research are welcome! Also, all current JGI Community Science Program (CSP) users, as well as investigators considering an application for future CSP calls.

Running parallel with the Meeting, the JGI will be hosting the first ever Viral EcoGenomics and Applications (VEGA) Symposium – Big data approaches to help characterize earth’s Virome. The goals of the one and a half day symposium are to bring together a “viral ecogenomics” community, i.e. experts of viral/phage genetics, structure, ecology, evolution, and (meta)genomics, to foster discussions centered on how to best capture and characterize uncultivated viruses, understand the role of viruses in natural ecosystems, and functionally explore viral genetic diversity.

When: March 13 - 16, 2018
Where: Hilton San Francisco in Union Square

For more information or to register, please visit the meeting website.

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