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May 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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U.S. moves to shut down dodgy stem cell clinics

The U.S. Department of Justice filed lawsuits to shut down clinics in Florida and California that have been marketing and performing unapproved and unproven stem cell treatments to patients. The initial targets of the California lawsuit are California Stem Cell Treatment Center and Surgical Network Corporation which, according to the LA Times, charges patients thousands of dollars per treatment. The Florida filing is against U.S. Stem Cell Clinic.

Though there has been a great deal of media coverage of suspect stem cell treatments, the number of clinics continues to grow as desperate patients look for a last chance at health or search for a miracle cure. Many patients end up going deeply into debt for the uninsured treatments and the clinics reap the rewards – sometimes benefiting from celebrity-led hype.

CIRM, California’s Stem Cell Agency is one of many organization that has been pushing for the crackdown, but even in the face of such opposition the clinics have said they will “vigorously defend” themselves against the actions.

We aren’t seeing quite the same activity here in Canada, but the controversial U.S. stem cell clinics do have Canadian connections. Health Canada is investigating some of the clinics and procedures but as the head of one of the Canadian clinics said “"I didn't alert them that I'm doing it,"… "I get very upset when the government — certainly the federal government — interferes with the patient-physician relationship." There is even an Alberta connection that your GenOmics editor brought to the attention of the media resulting in this interview on CBC radio.

This is not likely the end of the crackdown so check future newsletters to help keep you up-to-date.

Six promising genetically engineered animals stuck in regulatory purgatory

The Canadian led effort to develop a genetically modified salmon met with scientific and regulatory success. It is however, pretty much alone when it comes to genetically modified food that will appear on your table.
Source: New Food Economy

How a massive effort to sequence genomes of 1.5 million species could help preserve life on Earth

Scientists estimate that we on track to lose more than half of all species by the end of the century. An international consortium of researchers is organizing a massive effort to collect and sequence the DNA of Earth’s 1.5 million known eukaryotes in the hope that hidden in gigabytes of DNA, there are some hints on how to save at least some of them.

Scientists are joining forces to save chocolate from extinction

Climate change is threatening your chocolate craving. The cacao plant is more susceptible to disease and fungal infections brought on by extreme conditions. UC Berkeley and food company Mars are working together to develop a gene-editing technology to yield more resilient cacao crops and save your decadent snacking behaviour.
Source: Interesting Engineering

Door will open to genetic discrimination if act protecting Canadians is overturned, genomics expert says

Quebec is challenging Canada's Genetic Non-Discrimination Act which became law in 2017. The province is challenging the constitutionality of the act saying that by making it illegal to deny a service based on someone's genetic test results, the act infringes on the regulation of the insurance industry — a provincial jurisdiction.
Source: CBC

Biomarker predicts benefit from immunotherapy

A research team led by Drs. J. Joseph Melenhorst and Joseph Fraietta of the University of Pennsylvania looked at whether gene activity in T cells could identify which people with chronic lymphocytic leukemia (CLL) will benefit from CAR T-cell therapy. The promising results of their work have been published in Nature Medicine.
Source: NIH Research Matters

Crowdfunding for unproven stem cell–based interventions

People who turn to unproven stem cell treatments cannot get insurers to pay for procedures are faced with raising the money themselves. Some go into debt, but more are turning to crowd funding to raise the cash needed for what can be expensive interventions. It has raised questions concerning how treatment benefits and risks are depicted in crowdfunding campaigns.
Source: JAMA Network

Vaccines are driving the evolution of pathogens

Just as antibiotics breed resistance in bacteria, vaccines can set off changes that enable diseases to escape their control. Researchers are working to head off the evolution of new threats.
Source: Quanta magazine

You know that romaine-linked outbreak? DNA tech is fixing it

Tracking down the source of food contamination outbreaks can sometimes read like a good detective novel. Interview the victims, search for related outbreaks, look for connections, then nab the culprit. Technology entered the picture when the food detectives started to analyze clumps of DNA from the microbes collected from the patients. Now whole genome sequencing has entered the picture and our detective novel has taken on a high-tech feel as well. Good video and graphics accompany this story.
Source: Futurism

How do corporations perceive their role in the GMO debate?

In a five-part series on GMOs in global food security, Devex (media platform for the global development community) has been investigating the role of GMOs in developing countries through the lens of governments, donors, scientists, and campaigners. This is the 5 in the series and it focuses on the big multinationals involved in GMO production and research. The article includes links to the first four in the series: 1)Are GMOs the key to global food security? 2)Understanding the continued opposition to GMOs 3)Who are the donors taking on GMOs? 4)What are the political drivers for GMOs in developing countries?
Source: Devex

The million dollar cow: high-end farming in Brazil – photo essay

Photojournalist Carolina Arantes documented Brazil’s thriving cattle industry and witnessed how farmers work with genetics companies to improve the performance and profitability of their herds.
Source: The Guardian

The catch-22 of mass prescribing antibiotics

Deaths dues to trachoma among almost 200,000 children in villages in Malawi, Tanzania, and Niger dropped by an average of 13.5 percent in the communities where kids received regular antibiotics compared to ones where they got placebos. The children in these trials were healthy, yet they were given antibiotics—a practice that increases the risk that bacteria will adapt to the drugs and become resistant.
Source: Wired

Stock photos of scientists reveal that science is mostly about staring

When you can’t find a ‘real’ photo of a ‘real’ scientist the fall back is stock photography. Those stock seem to be revealing the truth about science - that it is mostly about staring. Some of those real scientists have taken to Twitter to post some of their favourite #BadStockPhotosOfMyJob .

Feature: Gene Editing News Up arrow

As D.I.Y. gene editing gains popularity, ‘someone Is going to get hurt’

After a virus was created from mail-order DNA, scientists are sounding the alarm about the genetic tinkering carried out in garages and living rooms.

Harvard and MIT launch gene editing company

Pioneers of the field at Harvard University and Massachusetts Institute of Technology have launched Beam Therapeutics with $87m initial venture capital funding.
Source: Financial Times

ELSI panel dives Into germline gene editing at Biology of Genomes

Germline genome editing looks increasingly as if it could become a reality, prompting a panel at the Biology of Genomes meeting here this week to discuss its potential ethical and societal effects.

Papers & Features Up arrow

Determinants of response and resistance to CD19 chimeric antigen receptor (CAR) T cell therapy of chronic lymphocytic leukemia

Joseph A. Fraietta et al. Nature Medicine (2018) doi:10.1038/s41591-018-0010-1

As noted above, A research team led by Drs. J. Joseph Melenhorst and Joseph Fraietta of the University of Pennsylvania looked at whether gene activity in T cells could identify which people with chronic lymphocytic leukemia (CLL) will benefit from CAR T-cell therapy, underscoring the potential of using pretreatment biomarkers of response to advance immunotherapies.

Lessons learned from a study of genomics-based carrier screening for reproductive decision making

Benjamin S. Wilfond et al. Health Affairs (2018)https://doi.org/10.1377/hlthaff.2017.1578

Our experience can inform understanding of the potential impact of expanded carrier screening services on health system workflows and workforces—impacts that depend on the details of the screening approach. We found limited patient or health system harms from expanded screening. We also found that some patients valued the information they learned from the process. Future policy discussions should consider the value of offering such expanded carrier screening in health delivery systems with limited resources.
Source: Health Affairs

Scrutinizing the EU General Data Protection Regulation

Luca Marelli et al. Science (2018) DOI: 10.1126/science.aar5419

On 25 May 2018, the European Union (EU) regulation 2016/679 on data protection, also known as the General Data Protection Regulation (GDPR), will take effect. The GDPR, which repeals previous European legislation on data protection (Directive 95/46/EC) (1), is bound to have major effects on biomedical research and digital health technologies, in Europe and beyond, given the global reach of EU-based research and the prominence of international research networks requiring interoperability of standards. Here we describe ways in which the GDPR will become a critical tool to structure flexible governance for data protection.

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.

Pint of Science

Join Genome Alberta’s own Harleen Ghuttora, along with Vince O’Gorman, and Alejandro Ramirez-Serrano to talk about science over a glass of your favourite refreshment.

They will be at the Village Brewery from 6:00p to 8:00p to talk about how we are handling the large amounts of data flooding into many sectors of society including robotics and business. Harleen will be talking about our little corner of the data pool and how researchers are processing DNA sequencing data to reveal information about human health, agriculture, and the environment.

When: May 16 from 6:00 to 8:00p
Where: Village Brewery, 5000 – 12a ST SE, Calgary

Impact of Science 2018

The AESIS Network brings together experts such as R&D evaluators, university managers, research councils, policy makers, funders, and other stakeholders of impact. The goal of this conference is sharing, evaluating and discussing best practices around the world on:
  • Policy strategies for societal impact
  • Creating (long-term) alliances between stakeholders
  • Regional, national and international instruments for evaluating and achieving impact
  • Current issues on i.e. public engagement, evidence-based policy, interdisciplinary approaches and harmonising definitions and assumptions.
When: June 14 - 15, 2018
Where: Fairmont Château Laurier, Ottawa, Ontario

ComSciCon 2018

At ComSciCon's National Workshop, participants build communication skills that scientists and other technical professionals need to express ideas to their peers, experts in other fields, and the general public. 

This year, the panel discussions feature the following topics:

  • Creative / Digital Storytelling
  • Diversity / Inclusivity in Science and Science Communication
  • Science Journalism
  • Case Study: Science Communication in Medicine

In addition to these discussions, time is allocated for networking with science communication experts and developing science outreach collaborations with fellow graduate students. Workshop participants will produce an original piece of science writing and receive feedback from workshop attendees and professional science communicators, including journalists, authors, public policy advocates, educators, and more.

When: June 14th-16th, 2018
Where: Boston, MA

To apply, click here. Acceptance to the workshop is competitive; attendance is free, and travel support and lodging is provided to accepted applicants.

For more information, please contact comscicon18@comscicon.org or join the informational email list

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