The project of this thesis, titled 6 PRINCIPLES DNA, investigates how well the privacy policies of companies in the Direct-to-Consumer Genetic Testing industry adhere to the analyzed genetic privacy principles of anonymity, confidentiality, fairness, liability, security, and transparency, so as to improve consumers' literacy in this area and bring to light those problems that have caused the emergence of an asymmetric relationship between companies and their consumers. The field of genetics has made numerous advances from the discovery of DNA and its sequencing to the emergence of the Direct-to-Consumer Genetic Testing industry, which is made up of companies all over the world that are involved in selling DNA tests of different types directly to consumers. From the founding in 2006 of the first company until today, this industry has continued to evolve and expand along with its benefits and risks, but its regulation has failed to keep up with this speed of advancement, which is why the main concern of consumers is how companies protect their genetic data. This work was made possible by two phases of research guided by a data-driven methodology: the first focused on reconstructing the industry using the tracking tactics described by DiSalvo, and the second on investigating privacy policies and the subsequent creation of a method for evaluating and visually translating them, as there is currently none for this purpose. The prototype of the 6 PRINCIPLES DNA website was designed to answer the following questions, "which companies are in the Direct-to-Consumer Genetic Testing industry and what are their characteristics?" and "how well is consumer genetic privacy respected in the privacy policies of Direct-to-Consumer Genetic Testing companies?" The goal of this digital artifact is to propose an alternative narrative to the one promoted by companies that have a tendency to emphasize the benefits and mask the risks of the products and services they sell, for example sharing genetic information with third parties or for unstated purposes; thus facilitating the emergence of new thinking and debates that could also lead to changes in the area of privacy policy regulation. In addition, through transparent and accessible disclosure of the information collected, consumers have the opportunity to improve their literacy regarding genetic privacy and make more informed and informed choices to protect their genetic data to the best of their ability.
Il progetto di questa tesi, intitolato 6 PRINCIPLES DNA, indaga quanto le privacy policy delle compagnie dell’industria del Direct-to-Consumer Genetic Testing rispettino i principi di privacy genetica analizzati di anonymity, confidentiality, fairness, liability, security e transparency, così da migliorare la literacy dei consumatori in questo ambito e far emergere quei problemi che hanno provocato il crearsi di una relazione asimmetrica tra le aziende e i loro consumatori. Il campo della genetica ha fatto numerosi progressi a partire dalla scoperta del DNA e del suo sequenziamento fino ad arrivare alla nascita dell’industria del Direct-to-Consumer Genetic Testing, la quale è costituita da aziende presenti in tutto il mondo che si occupano di vendere test del DNA di diverse tipologie direttamente ai consumatori. Dalla fondazione nel 2006 della prima compagnia fino a oggi, questa industria ha continuato a evolversi e ad ampliarsi insieme ai suoi benefici e ai suoi rischi, ma la sua regolamentazione non è riuscita a stare al passo con questa velocità di avanzamento, motivo per cui la principale preoccupazione dei consumatori è la modalità con cui le aziende proteggono i loro dati genetici. Questo lavoro è stato reso possibile da due fasi di ricerca guidate da una metodologia data-driven: la prima si è focalizzata sulla ricostruzione dell’industria con l’utilizzo della tattica del tracciamento descritta da DiSalvo e la seconda sull’indagine delle privacy policy e alla conseguente creazione di un metodo per la valutazione e la traduzione visiva delle stesse, dato che attualmente non ne esiste uno con questo scopo. Il prototipo del sito web di 6 PRINCIPLES DNA è stato progettato per rispondere alle seguenti domande: “quali sono le aziende dell’industria del Direct-to-Consumer Genetic Testing e quali sono le loro caratteristiche?” e “quanto viene rispettata la privacy genetica dei consumatori nelle privacy policy delle aziende di Direct-to-Consumer Genetic Testing?”. L’obiettivo di questo artefatto digitale è quello di proporre una narrazione alternativa a quella promossa dalle aziende che hanno la tendenza a enfatizzare i benefici e a mascherare i rischi dei prodotti e dei servizi che vendono, ad esempio la condivisione delle informazioni genetiche con terze parti o per finalità non dichiarate; in questo modo si facilita la nascita di nuove riflessioni e di nuovi dibattiti che potrebbero anche portare a dei cambiamenti nell’ambito della regolamentazione delle privacy policy. Inoltre, tramite la comunicazione trasparente e accessibile delle informazioni raccolte, i consumatori hanno la possibilità di migliorare la propria literacy per quanto riguarda la privacy genetica e di effettuare delle scelte più informate e consapevoli per proteggere al massimo delle proprie possibilità i loro dati genetici.
6 Principles DNA : comunicare la privacy genetica: metodologia data-driven di ricerca, valutazione e traduzione visiva
Vanoli, Barbara
2021/2022
Abstract
The project of this thesis, titled 6 PRINCIPLES DNA, investigates how well the privacy policies of companies in the Direct-to-Consumer Genetic Testing industry adhere to the analyzed genetic privacy principles of anonymity, confidentiality, fairness, liability, security, and transparency, so as to improve consumers' literacy in this area and bring to light those problems that have caused the emergence of an asymmetric relationship between companies and their consumers. The field of genetics has made numerous advances from the discovery of DNA and its sequencing to the emergence of the Direct-to-Consumer Genetic Testing industry, which is made up of companies all over the world that are involved in selling DNA tests of different types directly to consumers. From the founding in 2006 of the first company until today, this industry has continued to evolve and expand along with its benefits and risks, but its regulation has failed to keep up with this speed of advancement, which is why the main concern of consumers is how companies protect their genetic data. This work was made possible by two phases of research guided by a data-driven methodology: the first focused on reconstructing the industry using the tracking tactics described by DiSalvo, and the second on investigating privacy policies and the subsequent creation of a method for evaluating and visually translating them, as there is currently none for this purpose. The prototype of the 6 PRINCIPLES DNA website was designed to answer the following questions, "which companies are in the Direct-to-Consumer Genetic Testing industry and what are their characteristics?" and "how well is consumer genetic privacy respected in the privacy policies of Direct-to-Consumer Genetic Testing companies?" The goal of this digital artifact is to propose an alternative narrative to the one promoted by companies that have a tendency to emphasize the benefits and mask the risks of the products and services they sell, for example sharing genetic information with third parties or for unstated purposes; thus facilitating the emergence of new thinking and debates that could also lead to changes in the area of privacy policy regulation. In addition, through transparent and accessible disclosure of the information collected, consumers have the opportunity to improve their literacy regarding genetic privacy and make more informed and informed choices to protect their genetic data to the best of their ability.File | Dimensione | Formato | |
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https://hdl.handle.net/10589/202952