Scitech | Bridging gaps in science and policy

The importance of regulation and reform

On September 27, members of research, industry, and policy making communities gathered for the fourth annual Science & Policy Exchange. The event was organized by McGill graduate students across various faculties and was designed to begin the exchange of ideas about many important contemporary science and policy topics facing Quebec and the rest of the world. Genomic information, open access journals, and big data were some of the many topics of discussion.

 The conference opened with Dr. Catalina López Correa, the Vice President of Scientific Affairs at Génome Québec, who spoke of the importance of developing policy in the context of the genomic revolution. Genomic sequencing involves assessing individuals’ DNA sequences and searching for genes corresponding to susceptibilities to certain diseases and conditions. Because of its decreasing cost and the relative ease of conducting a genetic test with direct-to-consumer tests through companies like 23andMe, genomics is now no longer just in the lab. Genetic testing has accumulated huge amounts of data, and important questions surround how to handle and share it. Recently, Génome Québec Innovation Centre and McGill developed an initiative called International Policy interoperability and data Access Clearinghouse to develop a framework for informed consent, policy, and sharing data while protecting individuals’ privacy.

“Technology is advancing very fast. Society and the healthcare system are not developing as quickly. In order to make sure they are going at the same rate, we really need to have [a] dialogue [in order to] make sure they are going the same direction,” Correa advised. Globally, there are some regulations in place regarding patient privacy and lab practice. However, a surprising fact remains – Canada is the only G8 country that does not have regulations regarding genetic data. “In one way, it’s positive […] if you go the extreme of regulation, you can slow down innovation because you impose so many barriers,” Correa told The Daily, “[however] we need to work together to develop a regulatory framework.” Correa emphasized that when considering these issues, it is important to strike a delicate balance between keeping data private while also giving enough access to allow patients and society to benefit from information gained from the data.

One of the most engaging panels during the conference discussed the issues surrounding open access journals in academia. One of the panelists, Stevan Harnad – a cognitive sciences professor at the Université du Québec à Montréal – described the open access movement as a very important and time sensitive issue. Subscription to research journals is expensive, limiting access of data to researchers who need it. Harnad stated that, “Even Harvard, one of the richest universities on the planet, and arguably the largest library budget, can only afford a fraction of journal subscriptions.”

The current system of academic publishing is not only unsustainable, but it suffocates one of the basic tenets of research – the spread of knowledge. “[Researchers] are not selling their words, they are diffusing their ideas […] they do it partly because their life is dedicated to research and the only way to make your research count is to distribute it to others and they can use it, build upon it, and apply it,” Harnad described. Analysis of publications and citations has shown that open access articles are downloaded and cited much more than non-open access literature. Some disciplines, such as physics, have embraced the open access system, but many others still have a long way to go. “We want science to progress, and that means we need open access immediately,” Harnad urged.

The final keynote speech was given by Rafal Rohozinski of the SecDev Group (a cyber research group dedicated to analysis of global issues), who discussed the role of big data in shaping modern society. “We live in an era where data rules [as] king.” Rohozinski stated, “It drives policy and academia. You are trained as data scientists no matter what you are educated in.” In this talk, Rohozinski painted a picture of today’s data-driven world, pointing to the emergence of ‘open empowerment,’ growing access to technologies that were previously only available to the state, increased connectedness across individuals in all societies, and the seemingly boundless possibilities of cyberspace.

Over the years, the centre of cyberspace has shifted to the developing world, “with the very demographics that are the most connected to cyberspace being those with the greatest motivation for change in life,” described Rohozinski. This increased connectedness has been one of the driving forces of the many movements we have seen in areas such as the Middle East in recent years. In places where people are hungry for change, cyberspace has provided a platform for individuals to collectively mobilize.

According to Rohozinski, “The Syrian conflict is the poster child of the first civil war to be fought in the full glare of cyberspace.” He also provided some very compelling statistics – prior to the war, 14 million people were connected to the internet with cellphones, and in the last three years, more than 400,000 subscribers have been joining the internet each year. “People are subscribing to the internet because knowing what’s going on around you [in a conflict zone] can be just as important as food and shelter.” Technology in countries plagued with conflict has resulted in tremendous amounts of data created by citizens: sites such as SyriaTrackers, Women under Siege, and Syria Update have emerged rapidly during the war.

However, Rohozinski also pointed out that states have come to realize these potentials, and described one of the greatest trends in recent years: an attempt by states to create borders in cyberspace. “The real risk is that as states try to create predictability and prevent individuals [from] express[ing] themselves, the sharing of data will no longer exist, but will be replaced by censors and checkpoints,” warned Rohozinski.

This year’s Science and Policy Exchange was filled with many compelling topics that left that audience with much to mull over. As both science and technology develop, creating policy that regulates development, while maintaining the rights and freedoms of individuals, will be paramount in the coming years.