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March 31, 2017


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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Budget 2017 falls flat with Canadian scientists

The innovation budget as it was being called in the months leading up to budget day on March 22nd did not get good reviews from Canada’s science community. Nature magazine says it puts a freeze on the main funding pipeline for basic research in the country. In particular there was no money set aside for Canada’s tri-councils of the Canadian Institutes of Health Research, the Natural Sciences and Engineering Research Council of Canada, and the Social Sciences and Humanities Research Council. There was no new money made available for Genome Canada. While this is disappointing to Canada’s Genomics Enterprise there were some bright spots for the science and technology community.
  • Budget committed $6 million in new funding in 2018-2019 for the Stem Cell Network
  • The Canadian Institute for Advanced Research will receive $35 million over five years to support its international collaborative research networks.
  • The budget proposes to invest up to $950 million over five years starting 2017-2018,( $800million drawn from budget 2016 and $150 million of new money) to be provided on a competitive basis in support of a small number of business-led innovation “superclusters” that have the greatest potential to accelerate economic growth. The areas of focus will be : advanced manufacturing, agri-food, clean technology, digital technology, health/bio-sciences and clean resources, as well as infrastructure and transportation
  • $2 million is set aside to fund the new post and office of chief government science adviser
The complete 280-page budget document is available online (pdf file) so you can go through it and focus on your own areas of interest.

Doctors say unproven stem cell treatment blinded 3 women

Researchers have been studying the possible use of stem cells to treat some vision problems (such as this one) but there are no conclusive studies and no approved treatment. Nevertheless there are clinics offering unproven stem cell therapies, with patients paying the price when it all goes wrong . Though stories of ‘strip mall’ stem cell therapy are not new, the recent story that went out across the wire services about 3 women left blinded by stem cell treatment set of a new wave of Tweets, blogs, and mainstream media comment. The BBC was one of the outlets that started to look into the practice and they found another patient who seemed to have been left worse off after treatment than when he first went into a clinic. This 27 minute audio podcast follows his story from when he went in with high hopes thinking he was part of a clinical study. To help counter unscrupulous practices charities such as the Macular Society in the U.S. is warning people about “off-the-charts dangerous” procedures.

Critics of such unproven treatments are also paying a price as companies take to the courts alleging libel or slander.

Visualizing the genome: Researchers create first 3-D structures of active DNA

As someone on Twitter said “fascinating”. We would add “cool” as well. The work was on the 3D view done largely at the Cambridge Department of Biochemistry, and this story comes complete with a short visualization of the 3D structure derived from mouse cells.
Source: Knowridge Science Report

The role of universal health literacy precautions in minimizing “medspeak” and promoting shared decision making

Jargon can be a problem in many fields of science or business, but when it comes to medicine it can get in the way of patient care. The problem gets worse when the health care provider and the patient don’t share a common mother tongue. Solving the problem can improve the outcomes.
Source: AMA Journal of Ethics

A makeover for the world's most hated crop

Oil palm plantations have a reputation as an environmental menace. Can the latest genetic research change that?
Source: Scientific American

Too much knowledge? Should you sequence your baby’s genome?

Sequencing technology is leading us into a new world full of knowledge and information that could change the course of our lives from the day we are born. Could parents end up with too much information about their baby and do they completely understand that information? Technical, legal, societal, and personal factors all come into play when dealing with the challenges.
Source: Genetic Literacy Project

Investigating the case of human nose shape and climate adaptation

The shape of your nose and the changing nature of our climate over history. There is a link believe it or not.
Source: PLOS Genetics

Why talk to a reporter? Especially about something difficult and personal

Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science That Rescued Them is a long title for a book that is pretty specific about its focus. The Baxley family in the U.S. has had to deal with the effect of GSS (Gerstmann–Sträussler–Scheinker syndrome ), a fatal neurological disease. This article isn’t about the disease or even really about the book. It is about the writer’s experience in getting the family to talk about themselves and the often painful details of what the disease has meant to them.
Source: NY Times

We don’t need to double world food production by 2050 – here’s why

Often the case for use of agricultural biotech is backed up by the argument that we need to significantly increase food production by 2050 when the global population could easily be 9.7 billon. The authors of this article suggest that the “world will need only 25 percent to 70 percent more crop output in 2050 than was produced in 2014”.
Source: The Conversation

Implementing public health genomics in your state

This video from a Genetic Alliance and the American Public Health Alliance webinar is a few months old now, but it got some new life when it was shared across social media this month. The panelists are Dave Dotson from the Centers for Disease Control , Ridgely Fisk Green an ASHG Public Health Genetics Fellow, and Marta Green from the University of Florida Community Health & Family Medicine faculty. The panel was moderated by Muin Khoury, Director of the CDC Office of Public Health Genomics.
Source: Genetic Alliance YouTube channel

HR 1313: life-threatening law targets Americans with genetic defects

The House of Representatives Bill H.R 313 before the U.S. Congress right now is to “clarify rules relating to non-discriminatory workplace wellness programs”. It seeks to exempt some workplace wellness programs from “limitations under the Genetic Information Nondiscrimination Act of 2008 on collecting the genetic information of employees or family members of employees”. It is written by Stephen Cobb, whose wife has Hereditary hemochromatosis.
Source: Fighting the Celtic Curse blog

Educating for a sustainable future: Why ethical and safe practices are critical to teaching STEM subjects

By the time budding young scientists hit their post graduate research phase of their careers they have been exposed to at least some ethical issues and research oversight committees. This article suggests that they should be getting some ethical insight starting much earlier in their schooling. Can science teachers find the time to keep up with new science, develop new teaching material, and still inject a healthy dose of ethical and societal thought?
Source: Wonderville

Precision nutrition: Hype or hope?

In our last issue we mentioned a genetic test to determine when you will die, but on the not so far fetched side, is the use of genetics to help people manage their nutrition. It is feasible though there are many variables.
Source: Harvard T.H. Chan School of Public Health

The readability of scientific texts is decreasing over time

There was a lot of scientific writing taking place between 1881 and 2015 and it contained a lot of jargon but researchers have analyzed it all. According to the readability study, an ever increasing amount of jargon and it is getting in the way of reproducibility and accessibility.
Source: bioRxiv

Largest genetic study to date reveals broad spectrum of autism

With a strong Canadian contingent of researchers, an international team has analyzed over 5,000 complete genomes from families affected by autism. They identified a number of new genetic variations linked to an increased risk of the disorder.
Source: Huffington Post

Considerations for genetic testing

A checklist to help clinicians quickly identify patients that should seek a genetic counselor for colorectal cancer concerns.
Source: Invitae

How crop monocultures are threatening our food supply

With climate change comes a change in the insects and diseases that can devastate crops. As we move to a less diverse selection of crops for our global food supply, that might mean a single crop failure would lead to major problems.
Source: Maclean’s

Japanese man is first to receive 'reprogrammed' stem cells from another person

This is the first time anyone has received induced pluripotent stem cells to treat any condition. Unlike some of the dubious and health threatening stem cell treatments in the news lately, this was a carefully designed study. Some of the shady stem cell treatments are referenced elsewhere in this edition of our Digest.
Source: Nature

Feature: Gene Editing News Up arrow

Editing the book of life

Reading, writing, and editing is no longer just what we do to our e-mails – it is now something we can do to our genetics. China Daily took a trip to the South X Southwest event and talked with Jennifer Doudna as part of this in-depth look at gene-editing technology.
Source: China Daily

How did science create an apple that does not brown?

The Arctic Apple as not developed by introducing any news genes but came about by turning off a gene. Is it safe and what’s next?
Source: Best Food Facts

And while we are tackling some of the basics:

What’s the deal with CRISPR?

Source: McGill Tribune

Papers & Features Up arrow

Ethical governance and ethical tools

Forsberg EM, et al. (2017) Chapter, Evaluating Ethical Frameworks for the Assessment of Human Cognitive Enhancement Applications Part of the series SpringerBriefs in Ethics pp 7-14 doi: 10.1007/978-3-319-53823-5_2

Ethically sensitive decision making is needed both with regard to general policies on human enhancement and with regard to specific enhancement applications. Science, technology and innovation policies may, on the one hand, be developed to support or steer HE technology trajectories in certain directions. This requires societal deliberation regarding the kind of innovation we, as a society, want to encourage
Source: SpringerBriefs in Ethics

Scientific controversies as proxy politics

Hicks, Daniel J. (2017) Issues in Science and Technology; 33.2 : 67-72.

Indeed, in many cases, scientific controversies aren’t actually about the science. Instead, science provides an arena in which we attempt to come to terms with much deeper issues—the relationship between capitalism and the environment, the meaning of risk, the role of expertise in a democracy. Science, in other words, serves as a proxy for these
political and philosophical debates. But science often makes a very poor proxy.
Source: Issues in Science and Technology

The role of genetic counsellors in genomic healthcare in the United Kingdom: a statement by the Association of Genetic Nurses and Counsellors

Middleton A, et al, (2017) European Journal of Human Genetics advance online publication doi: 10.1038/ejhg.2017.28

The Association of Genetic Nurses and Counsellors (AGNC) in The United Kingdom (UK) and Republic of Ireland is committed to supporting genetic counsellors, across all sectors of healthcare and research, as they help deliver genomic medicine for the patient, family and world-class health services.
Source: European Journal of Human Genetics

Insights from early experience of a Rare Disease Genomic Medicine Multidisciplinary Team: a qualitative study

Ormondroyd E, et al, (2017) European Journal of Human Genetics; doi: 10.1038/ejhg.2017.37

We present findings of a study exploring decision-making in the GM-MDT at this pivotal point in translating WES/WGS technology into medical management of rare disease. The aim of the study was to delineate and describe the process of decision-making: the factors that are considered and evaluated by the GM-MDT in reaching decisions. Study findings illustrate how decisions are made both strategically and at an individual case level, and the ways in which local, national and international influences are shaping early genomic medicine practice.
Source: European Journal of Human Genetics

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.

Cracking the Genetic Code for Better Health

Advances in genomics – the study of genes and their functions – are allowing researchers and physicians to customize health care and treat individuals according to their genetic makeup.
Dr. Francois Bernier, an expert in rare diseases, will explain how genetic sequencing, can give physicians more tools to understand what their patients need and to provide more personalized and precise care.

When: April 4, 2017, 12:00 - 1:00 PM MST
Where: Online

Register here for the webinar

Stem Cell Summit 2017

The Stem Cell Summit provides information on cutting-edge developments in all areas of stem cell research from bench to bedside, including the biology, medicine, applications, regulations, product development, and the commercialization of stem cells. Stem Cell Summit 2017 includes two back-to-back conferences including joint plenary session:
  • Conference 1: 14th Stem Cell Research & Regenerative Medicine
  • Conference 2: 6th Stem Cell Product Development & Commercialization
  • Joint: Plenary Session - Where do We Stand with Cell Therapy in Diabetes?

When: April 5-7, 2017
Where: Hyatt Regency, Boston, Massachusetts

For more information & registration, visit the conference website.

Precision Medicine in Child Health

The 17th Annual Precision Medicine Research Symposium will feature two major outside speakers and several speakers from the University of Calgary.

In addition there will be Poster Sessions and a Reception. Check out the Poster (.pdf file) for more detail.

When: April 19, 2017
Where: Alberta Children's Hospital Calgary, Alberta

Register here

Alberta's Annual Technology Celebration

AccelerateAB is the province’s annual flagship event and this year, it will be held in Calgary. Produced by The A100 and local community partners, the event brings together entrepreneurs, investors, key leaders, and supporters from across the province.

In addition, there will be a half-day round-table mentorship program that will provide startups with the opportunity to receive validation and support from some of Alberta’s most influential entrepreneurs.

When: April 19, 2017
Where: BMO Centre, Stampede Park, Calgary, Alberta

Check out AccelerateAB for more information

Genomics and Society: Expanding the ELSI Universe

This 4th ELSI Congress is the latest in a series of major conferences for researchers and others interested in the ethical, legal and social implications (ELSI) of genomic research. With keynote speakers, plenary panels, workshops, and a wide range of paper, panel, and poster presentations, the Congress will provide an opportunity for scholars to reflect on current research and to envision future directions for ELSI research.

When: June 5-7, 2017
Where: Jackson Laboratory for Genomic Medicine campus, UConn Health, Farmington, Connecticut

More information and registration available on the conference website.

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