Project Genetica
Literature was used in the early stage to try and understand some of the more personal experiences people had in the space.Finding humans that had or were willing to have a genetic test done were few and far between. The lack of real people to talk to presented an opportunity to experiment with a probe that provided insights into the experience people might have on their data. A set of fictitious test results were created and handed out to a small group of people that were asked to document and take photos of their experience; a group discussion followed.Research was done into a number of difference services in the area of personal genetics, both open source and commercial, that allow people to dig deeper into understanding themselves.A number of analogous areas and experiences were explored in order to better understand the types of engagements and behaviours people have around data.Biological family is the foundation of genetics; it's where things start and how they continue. Looking into different aspects of the types of tools families use in the health space provided a large amount of inspiration.9 long interview, a world-wide survey, street ethnography sessions, and less formal conversations provided a source for qualitative data. Understanding how people want to engage with their data and how they think a service provider might help them provided insights for potential design spaces.Wireframes were developed to try and understand what they wanted to see and utilise in an interface. Loom is a human-centered experience design framework and a personal genomic decoding service. It is one part self discovery and one part connectivity, allowing people unlock their data on their own terms. It consists of: Tokens and a Reader that allow people to receive their data through the use of RFID tags- data is linked and not stored; The Book- a soft introduction to the world of genetics and ancestry which also includes a place for people to document their discoveries for themselves and future generations; Connection Cards- are used to share data with the people that matter most putting the receiver in control (QR codes link to the senders semi-public and filtered profile).Tokens are divided into categories that can be chosen individually or in groups; traits, disease risks, carrier status (think Alzheimer's and Breast Cancer), and drug response. Additionally, traits and disease risks are broken down further allowing people to see groups of information based on decreased/typical or increased risk.Tokens are presented on a card that can be used to document the discovery in the book while providing an additional detail and introduction of what will be visualized on the screen.The book is a voluntary part of the service; allowing you to document, reflect on and provides a platform for you to share your discoveries with future generations. The initial pages of the book illustrate the Haplo-group providing a more personalized soft introduction to the world of genetics.The question you should start asking yourself today so we can start to think for tomorrow.

Abstract

We currently live in an era where the cost of sequencing a personal human genome is becoming increasingly accessible to the average person. This project focuses on the near-future increased accessibility of Direct-to-Consumer (DTC) genetic testing. It is an investigation into how we can challenge the way we interact with our personal genetic data and what it means to know this type of information.

It explores and questions the personal, familial and societal interactions present and said to emerge in this space. More specifically, it looks widely at questions surrounding scientific knowledge, genetic connections, fear of the unfamiliar, the amount and type of information, and the current testing support infrastructure.

Starting from a personal experience with genetic testing, this project looks at how the average person might want to discover themselves from the inside out. Using an experience design framework it takes a critical, near future, realistic, and empathetic lens that allows humans to explore their genome in a more personalized and supportive way.

Inspiration and Method

Grounded in research from people and science, initial research was conducted using literature due to the challenge of finding users. Ethnographic studies in the form of street conversations, a survey, in-depth interviews, analogous inquires, and an experimental probe were also conducted to provide a place to investigate possible design spaces.

Since this project walks a fine line between a critical and practical approach, it draws inspiration from Anthony Dunne (RCA DI) and his work in the intersections between design, technology, and science. More specifically, I was inspired by the projects Dunne & Raby presented in WHAT IF... from the 2011 Beijing Design Triennial. From an experience design perspective I drew inspiration from Timo Arnall's work on the Near Field Communication project, Skål. The physicality expressed in this project provides a tangible and playful way of interacting with digital content. It also embodies a low tech feeling which when translated into the genetic testing context provides a more accessible approach to data delivery.

Result

Loom is a human-centered experience design framework and a personal genomic decoding service. It is one part self discovery and one part connectivity. It is not prescriptive but rather provides the tools to allow people to unlock their data on their own terms, allowing people to direct their own experience. For the purpose of this project the act of spitting in a tube is removed, focusing on the experience of data delivery. Additionally, Loom is developed on the concept of Kairos time- the essence of information delivery in the right moment. The goal of Loom questions the way in which we currently receive and engage with our genetic data by creating a personal narrative and a family dialogue. This service framework also challenges the concept of what it means to pass data onto those in future generations. Furthermore, the concept hopes to promote a dialogue around the types of experiences people want to have, ultimately provoking the question: in an era when genetic data is increasingly accessible, what do you want your experience to look like?