The MinION DNA-scanner: More DNA, More Data, More Ethical Questions
Early this year British researchers first managed to read a complete DNA profile with a small device, the so-called MinION, which is as large as a USB stick. With this breakthrough and the invention of the device, it is not inconceivable that in the future it will be possible to map a person’s full DNA profile very quickly, cheaply and efficiently. In fact, it is not inconceivable that the DNA scanner becomes a daily utensil.
At first, it was only possible to read small pieces of the DNA wisps, but Nicholas Loman and his research team succeeded in using this device and special software to read a complete DNA profile (Jain et. al.). The device is already available and can be ordered online for a thousand dollars. It will probably be improved in the future so that people can also read an entire DNA profile in the blink of a moment. At first glance it looks like a nice gadget, but when the ‘ordinary citizen’ goes on with it, it also entails ethical concerns.
The device can offer many possibilities in the future and many people see the positive side of a fast, inexpensive DNA-scanner. For example, if the device were to be applied in health care, it would be easier to detect hereditary diseases in an early stage. In addition, the results will be available faster. Doing the process of a DNA test will take a lot less time, people and money and thus become more efficient. As a daily utility, people could check products on bacteria at the butcher’s or in the supermarket. This could prevent potential food poisoning. Furthermore, farmers for example can ‘read’ their crops and animals to see if they are ‘healthy’ (Keulemans).
MinION – Oxford Nanopore Technologies
It’s not just you
As has been said, as well as positive arguments, there are some ethical concerns. If everyone can easily read DNA profiles, then people can pretend to be a doctor or scientist. Without the intervention of a doctor or scholar, it is quite likely that there will be unnecessary panic or false ‘diagnoses’. In addition, there are companies that pay a lot of money for your DNA. Profiles are quickly worth thousands of euros because genetic information is of great importance for drug research. With this device it could be that people just start to sell their DNA profile. The downside about it is that DNA does not just say anything about yourself, but also about the hereditary information of your family. If a person chooses to give up his or her DNA, and this ends up in a database, it would be very easy to relate this with a lot of other family members, without them having anything to say about it (Van der Lende).
The question is: do we have to leave this to the ‘ordinary people’ and can they handle the responsibility? The answer is “no”. People are not perfect beings who always make well-considered decisions. If they take all aspects into consideration, they may choose not to just give up their DNA profile or to read their DNA profile without the intervention of a scholar (Thaler and Sunstein 5-6). A device like the MinION just makes it very easy to make the wrong decision about what you are going to do with your DNA.
The DNA-databank
A logical consequence of technologies such as a DNA scanner may be that all these data will be stored in a DNA database. If there is a more advanced version of the MinION on the market, that can actually read a complete DNA profile with only the device and a corresponding software, this idea is very attractive. If there is so much data from DNA, there will sooner or later be the idea to store it somewhere. Initially this will be on your own computer. But it is not inconceivable that the company that sells the device also want rights on the data, for example for further investigation. The authorities will be knocking on the door too. They see a future in the resolution of crimes and argue that an expansion of the DNA database would greatly increase success (Bomers).
Others are worried about the ethical side, but additionally about its effectiveness. Too much data can also cause investigations to crash, because the database leads to too many ‘hits’. David Bollier asks himself in his text The Promise and Peril of Big Data: ‘is more actually less?’ He states: “Perhaps less is more in many instances, [..] because more data collection doesn’t mean more knowledge.It actually means much more confusion, false positives and so on” (Verhulst cited in Bollier 14).
If everyone is stored in the DNA database, it also means that there are a lot of innocent people in it. Their DNA can also happen to be found at a crime scene while they have nothing to do with the crime. This creates confusion and unnecessary accusations. Furthermore, in the privacy debate, many people give the argument that they have nothing to hide. But they do not oversee the consequences when they are falsely accused of something they didn’t do (Martijn and Tokmetzis 181-184). In that case people would probably rather not have had their DNA, or that of a related family member, in a database. These people are entitled to integrity and privacy. It can have great consequences in a person’s life if, for example, his or her DNA is presented as a match in an investigation of a serious crime, while being innocent. It can also have great consequences for people’s insurance. If it becomes known which hereditary diseases people carry in their genes, insurers may want to make adjustments in the premium of those individuals, even if they may not even get sick. For this reason, it is important that people themselves remain owner of “the information that defines them” (De Gorgey 396).
Ethical Questions
Despite the objections, we will have to accept that this technology is emergent and not everyone will agree whether if it’s a good or bad addition for us as human beings and as a society. But as Neil Postman states: “one can still take a definite view about whether or not a medium contributes to or undermines humane concepts” (13). He proposes a couple of questions that should be asked when a new media object emerges. With the emergent of the MinION it is advisable to keep in mind questions like: “To what extent does a medium contribute to the uses and development of rational thought? Do new media give greater access to meaningful information? And to what extent do new media enhance or diminish our moral sense?” (Postman 13-15).
References
Bollier, David. “The Promise and Peril of Big Data.” The Aspen Institute; Communications and
Society Program (2010): 14-16.
Bomers, Loes. “NFI: verruiming van DNA-opslag zou succes enorm vergroten.” Een Vandaag.
- 19 September 2018. https://eenvandaag.avrotros.nl/item/nfi-verruiming-van-
dna-opslag-zou-succes-enorm-vergroten/
De Gorgey, Andrea. “The Advent of DNA Databanks: Implications for Information Pricvacy.”
American Journal of Law & Medicine. 16.3 (1990): 381-398.
Jain, Miten, et. al. “Nanopore Sequencing And Assembly Of A Human Genome With Ultra-long
Reads” Nature Biotechnology. Volume 36. (2018): 338-345. 19 September 2018.
https://www-nature-com.proxy.uba.uva.nl:2443/articles/nbt.4060#abstract
Keulenmans, Maarten. “Doorbraak: iemands DNA aflezen kan nu met behulp van een usb stick
voor nog geen 1000 euro.” De Volkskrant. 29 January 2018.
Martijn, Maurits and Dimitri Tokmetzis. Je hebt wél iets te verbergen. De Correspondent, 2016.
Postman, Neil. “The Humanism of Media Ecology”. Proceedings of the Media Ecology Association, Volume 1. (2000): 10-16.
Thaler, Richard and Cass Sunstein. “Introduction” Nudge: Improving Decisions About Health,
Wealth, and Happiness. New Haven, London: Yale University Press, 2008. 1-14.
Van der Lende, Valentijn. “Wat is DNA en wat kun je ermee doen?”. NPOFocus. NPO. 20
September 2018. https://npofocus.nl/artikel/7712/wat-is-dna-en-wat-kun-je-ermee-
doen
Van Teeffelen, Kristel. “Iedereen in de DNA-databank? Dat helpt niet echt.” Trouw. 23 August
2018.
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https://nanoporetech.com/products/minion
