Todd Kuiken in BioCoder: Citizen Health Innovators
May 5, 2017|Patti Mulligan
Read “Citizen Health Innovators: Exploring Stories of Modern Health” from BioCoder, Spring 2017
They say that necessity is the mother of invention. Many would argue that their greatest necessity is health. So what happens when treatments are ineffective or unavailable? Today, in the age of crowdfunding, some people are taking matters into their own hands and developing their own treatments, including surgical techniques, gene therapies and molecular therapies.
GES Senior Research Scholar Dr. Todd Kuiken, together with international science policy expert Eleonore Pauwels, of The Wilson Center, explores the risks, regulatory issues, and implications of the emerging DIY, “patient-powered” health research movement in the Spring 2017 issue of BioCoder.
This participatory turn has no official name. Some say “patient-led” or even “patient-powered” research, others “DIY health.” We call them citizen health innovators and have begun mapping their emergence and exploring their stories, as well as the ethical and regulatory landscape that surrounds them, with funding from the Robert Wood Johnson Foundation. But how did we get there? What enabled this new societal phenomenon to arise?
This article reviews the current state of gene-editing regulation for crops, illuminating the ways in which technology developers are repeating practices that may lead to the public and ethical failures of the first generation genetically engineered crops, and argues that the contentious socio-political history of genetic engineering will repeat itself for gene editing if these continue.
Clemson University, Feb. 1, 2019 | Dr. Gould has served on National Research council committees, addressing regulation of genetic technologies in agriculture. Dr. Gould received the Alexander von Humbodlt Award for most significant agricultural research over a fiver-year period, the Sigma Xi George Bugliarello Prize for written communication of science, and the O. MAx Gardner Award in 2012 for being the UNC faculty member with the greatest contribution to human welfare. He was elected to the US. National Academy of Sciences in 2011 and serves on the National Research Council Board on Agriculture and Natural Resources.
Innovative Genomics Institute, UC Berkeley, Jan 22, 2019 | Todd Kuiken Seminar: Governance of Emerging Biotechnologies in a World Without Borders. As synthetic biology, genome editing, gene drives, CRISPR, and the biotechnologies of tomorrow continue to emerge, international treaties are struggling to keep pace. While recognizing that biotechnologies are rapidly developing, with potential benefits and potential adverse impacts; how will treaties develop governance systems to both enable benefits while preventing or minimizing adverse effects? How do international treaties that address access and benefits sharing agreements based on “physical genetic material” incorporate (or not) digital sequence information? If engineered gene drives do not recognize a country’s or indigenous community’s sovereign lands; how does the international community address a situation where one country decides to move forward while another, or indigenous community, says no? And how does the International Union for Conservation of Nature, the global authority on the status of the natural world and the measures needed to safeguard it, incorporate (or not), the tools of biotechnology? These are just some of the complicated questions international treaties have been debating over the last 10 years. Join us for a discussion as I examine these and other issues through my personal experiences inside these debates.