IMPACT COMMUNICATION
AND INNOVATION
AND INNOVATION
Last month, subscribers to the UP Future Sight newsletter received a link to an article explaining why a genetic data breach is more dangerous than a credit card data breach. The piece, written by Angela Chen, starts with the fact that unlike a credit card, which can be replaced, our DNA cannot be modified. The author addressed this issue because that same week, the MyHeritage website—which offers DNA tests for people to better understand their origins through their genetic code—had been hacked. Although the leaked data only contained user emails and passwords, not their genetic data, it brought this possibility to the forefront of the conversation.
In an interview with The Verge, Giovanni Vigna, a computer science professor at UC Santa Barbara and co-founder of the information security company Lastline, commented that hackers can threaten to access or expose sensitive user data if victims do not pay the ransom—which is why an Indiana hospital ended up paying $55,000 to hackers. But in the specific case of genetic data, Vigna says it could “be sold or monetized by insurance companies. You can imagine the consequence: one day, you might apply for a long-term loan and be rejected because, deep in that corporate system, there is data showing I will likely have Alzheimer’s and die before I can pay off the loan.”
While MyHeritage does not offer this type of disease diagnostic analysis, companies like 23andMe and Helix do. As Chen describes, this information can be valuable to researchers who need genetic data for scientific research, such as finding cures for diseases like Alzheimer’s, but it can also be used by companies to calculate life and health insurance premiums, and by police to track criminals, as was done in a recent case in the United States.
. This topic was raised as one of the subjects in the "Science Fiction and Technological Innovation" debate, in which I participated this weekend at FLIP 2018. Alongside writers Cristina Lasaitis, Lady Sybylla, and Alexey Dodsworth, we discussed the fact that the Canadian government is using genetic data provided by companies like these to identify immigrants.
Jayden Robertson, a spokesperson for the Canada Border Services Agency, said last Fridaythat they are using DNA testing to determine the identity of “long-term detainees” after other techniques have been exhausted. “DNA testing helps the CBSA determine identity by providing indicators of nationality, thus allowing us to focus our investigation on specific countries.”
However, as pointed out in the news report on the case published by the CBC, this process also brings up the issue of data privacy guaranteed by these DNA testing sites and companies, in addition to having a very strong political factor when we consider how immigrants are treated by the government—something surprising, given that this initiative came from Canada. With more than 30,000 refugees having crossed the border from the United States into Canada since January 2017, these people were specifically fleeing Donald Trump’s immigration policies.
In a report published by VICE last Thursday, an immigration lawyer noted that one of his clients is being investigated by the CBSA based on DNA mapped in the FamilyTreeDNA.com database. In this case, Canadian authorities are looking for pretexts to deport the individual, who was from Liberia; however, based on the results of his genetic mapping and linguistic tests, the agency has speculated that he is from Nigeria. Such results are highly controversial, as they ignore the reality of migration and genetic exchange between peoples, something interestingly explored in this video, in which some participants who, even while identifying as Black or knowing their family originated from a certain country, ended up discovering that their genetic code is primarily composed of populations considered white and from countries other than those from which their ancestors actually immigrated.
Although the company FamilyTreeDNA does not admit to working directly with the Canadian government, CBSA representative Jayden Robertson says that they still seek user consent before handling their data. “The CBSA does not publicly discuss the mechanics of its investigative techniques, and if it did, it would end up rendering them ineffective,” he argues.
Another topic this raises for reflection is CRISPR gene-editing technology. In this case, while the technique is being touted as a possibility for editing our DNA to eliminate “defective” genes—that is, those that carry diseases like cancer or Alzheimer’s—there is also consideration of how this same technique could allow us to create so-called designer babies. Since our theme at FLIP was the relationship between science fiction and innovation, and how the genre not only fuels scientific curiosity but also serves as an important metaphorical tool for understanding the implications of a given technology in society, I brought up the comparison of CRISPR with what is addressed in the film Gattaca (1997).
Beyond thinking about the ability to choose the color of our children’s eyes and hair, it is the potential for enhancing certain physical traits that could limit and exclude those individuals born naturally—in the film, the so-called “God-children,” because they were not born after being manipulated by science. That is why, in that universe, we find the example of a great pianist who had his DNA manipulated to be born with six fingers on each hand, thus having greater abilities than a pianist with ten fingers.
On the other hand, in one of the episodes of the series Explained available on Netflix, it is precisely this issue of gene editing that is addressed from a very new and important perspective. One of the interviewees, who carries the gene for dwarfism, comments that her family has had this trait for several generations and she, now pregnant, also wants to pass it on. It is not as if this were a defect or a disability to her, since she is able to live a normal life despite her particularities. It is from this discourse that she asks: if there were a possibility to remove the dwarfism gene from her child, would she do it? And she says no, which would be the same case if the genetic expression pointed in another direction, for example, Down syndrome. That is, what the interviewee raises is the social problem as a more imposing force than the genetic issue.
Controversial yet stimulating, scientific breakthroughs like CRISPR open up various incredible possibilities for a healthier and more positive future for everyone, but with them also come the consequences of misuse that must be addressed from an ethical standpoint. Dodsworth, as a doctoral student in philosophy, has dedicated himself to investigating the ethical dilemmas surrounding transhumanism. During our conversation at FLIP, the researcher commented that, often, philosophy is only brought into the conversation when something has already gone wrong, so that the laws and the ethical side of technologies only end up being addressed once a problem has already occurred.
However, while in the West we try to unravel the mystery of the limits and possibilities of applying gene-editing technologies, in China, where values and culture differ, monkeys have already been cloned using the same technique as Dolly the sheep, which, however, points to a greater leap toward human cloning—something that, nevertheless, is not on the agenda for Chinese scientists.On the other hand, they are already using CRISPR to treat embryos containing disease-related genes, something that has also been worked on in the United Kingdom.
In an amalgam of cultural differences and technological competitiveness—after all, as also noted by Dodsworth during Flip, science has always been a distinctive element of power for nations—it is likely that we will end up entering a new Cold War, which, however, will be fought between the United States and China. This time, though, it is also likely that the race will no longer be space-based, but rather genetic.
