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Panel 205 - Mitigating disruption: integrating social

Conference Day: 
Day 2 - November 8th 2018
Takeaways and recommendations: 

Mitigating disruption: Integrating social, ethical and policy research into the development of disruptive genomic technologies

Organized by: Genome Canada, Rob Annan

Speakers: Sally Aitken, Professor and Associate Dean, Research and Innovation, Faculty of Forestry, University of British Columbia and Director of the Centre for Forest Conservation Genetics; Shannon Hagerman, Assistant Professor, University of British Columbia; Bartha Knoppers, Professor, McGill University, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy; Jacques Simard, Canadian Research Chair in Oncogenetics and Professor, Department of Molecular Medicine, Université Laval

Moderator: Eric Meslin, President and CEO, Council of Canadian Academies

Takeaways and recommendations

  • While the concept of a disruptive technology is apparently simple, taking stock of the specific features and implications of such a technology can be extremely challenging.

  • Communicating those features and implications can be no less challenging for the people engaged in this work, who may have little or no training in how to reach an audience outside of their area of expertise.

  • The techniques used to assess public understanding of disruptive technologies are no less important than the technologies themselves.

Example 1: Genomics and breast cancer screening

  • Multidisciplinary, international collaborative research on genomic traits related to susceptibility for breast cancer began in the early 2000s and continues to evolve.

  • Screening of patients in this way is entirely different from studying the disease as an independent topic. The goal of this investigation was not the understanding of the disease itself, but facilitating its treatment.

  • The research revolves around the analysis of large collections of patient information, which means much of the work deals with data sharing policies, access agreements, and harmonization of database files.

  • A leading initiative in the field is the Global Alliance for Genomics and Health (GA4GH), an international undertaking that brings together more than 500 organizations in 71 countries to develop strategies for employing genomic data in human health research.

  • The risk profiling and prediction models associated with GA4GH are disruptive insofar as they lead to a reconsideration of how clinical tools are classified and defined. More specifically, it is not clear who is responsible for employing these tools, and where the liability of the impact on patients should be placed.

  • As international borders disappear with respect to the ownership and sharing of genetic information, the nature of granting consent for this information is becoming less clear. The health care system should take some responsibility for helping patients assess this challenge, but patients themselves must become more proactive about the disposition of these data.

  • Growing numbers of people are contributing genetic information to databases without necessarily having any vested interest in the outcome, such as the risk of acquiring a particular disease.

  • Research institutions used to exert ownership over genetic samples thy handled, but the legal stance has since shifted to holding this material in trust.

Example 2: Genomics and forestry

  • Genomic analysis has emerged as an effective way of determining the future of forests, particularly the effects of climate change.

  • Forestry is a multidisciplinary pursuit that incorporates chemistry, biology, geology, and meteorology. Genomic studies of tree species are among the most recent innovations in this field.

  • As climate change affects the ability of trees to survive their local environment, genomic research is looking for the factors that would enable these organisms to adapt and thrive.

  • The simplest strategies for saving species is to move them to new settings that are better suited to their genetic characteristics, including their tolerance for particular temperatures and resistance to pests and disease.

  • In a jurisdiction like British Columbia, the vast majority of forests are on public land, which makes the introduction of new species a matter of public awareness and education.

  • Given the long lives of tree populations, there can be significant social and ethical implications to planning future forests based on genomic insights.

  • Since these new species may affect the landscapes where people live and work, as well as the economic well-being of the forest industry, researchers are building new collaborations at the local, regional, and national levels to arrive at a satisfactory strategy for proceeding.

  • Individuals and organizations who will be affected by this disruptive technology are not simply passive recipients of scientific information; they are being enlisted as participants in a long-term application of this technology.

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