& USER RESEARCH
Shift, Shape, Replace: Human Genetic Modification
This systems analysis and behavioral insights research attempted to start a dialogue about impact, policy, law, and perceptions of Human Genetic Modification (HGM) technology. It was a multi-phase project which investigated the landscape leading up to germline modification, the conflicts between regulation and investment worldwide, the stakeholders at play, and the potential systemic consequences of its implementation. It used user research to understand the public perception of HGM and forwards a method of policy implementation to position its development in a responsible and responsive manner.
Giga map, systemic analysis report, user research report
Ryan Taylor, Vanessa Rementilla, Janice DeJong, Jenny Whyte
Human germline modification, alters the DNA of egg and sperm cells, passing modifications on to future generations. Experimentation with this technology (CRISPR) is currently banned in Canada but we may have to reconsider this position as advancements, in experimentation and discovery, are made around the world. Public perception plays a significant role in shaping policy.
What is the current awareness and perceptions of Human Genetic Modification?
High might future perceptions and feelings change when imagining its possibilities?
How might these perceptions influence policy design?
What stakeholders are at play?
What are the regulations around this technology?
What are the reasons such regulations are imposed?
This project consisted of four distinct research phases and used various design research methods.
1. Case Study & Historical Analysis
Reproduction-related scientific advancements have a long, scorned and worried history. The most recent historical advancement, the "test tube baby," provides an interesting case study to examine how controversy in scientific advancements deteriorates over time, as its success is proven.
2. Testing Current Public Perceptions
The research was conducted on a sample of selected individuals, of similar age and educational background. Further research with a larger more diverse sample is required. A questionnaire was used to assess the perception and awareness of HGM technologies. Aspects such as whether participants had children, or aspired to have children were considered. A selection of knowledge testing questions relating to the science of genetics was included in order to measure the level of understanding. Acceptability of technology was measured through word association testing. A card sorting activity used to understand what aspects of human modification, participants current found acceptable, using germline therapy.
3. Future Envisioning Workshop
A generative research activity was design and facilitated to understand how the same participants might imagine or perceive the technology in a future where germline therapy was an accessible reality. Participants were given a social driver and asked to choose or imagine traits which would optimize humanity for that condition. Small group discussions were facilitated by researchers to elicit details as to why traits and characteristics were chosen.
4. System Mapping
Multiple layers and scales of the system were mapped to show the dynamics that may come to play examining this technology in society; how discourse influences policy, impact on government spending, systemic impacts of mass adoption, policies impact on ethics.
5. Stakeholder Analysis
An extensive stakeholder review was conducted to understanding the landscape of investments regulations and policy guidelines worldwide.
6. Trend Research
Trend scanning was used to explore the entire media environment for signals relating to HGM using the STEEP-V methodology.
A multi-method analysis was required to interpret the research findings.
Analysis of the questionnaire results primarily involved examining the participants’ awareness of genetic technology versus their acceptance of human genetic modification.
To visualize and understand possible archetypes, three profiles were formed to display a varying spectrum in agreement values. Using the data of individual profiles the following were formed: the optimist, the ambivalents and the naturalists.
The visual artifacts produced by participants during the generative exercise, and both the oral and written sentiment expressed during the facilitated sharing and conversation were used for data analysis.
MAJOR LEARNINGS & INSIGHTS:
The greater awareness of the technology, the more open participants were to its uses.
The acceptability of human genetic modification appears directly proportional to ones awareness or education about it.
When examining use cases for HGM in current conditions there is some acceptibility of the technology.
Measuring participant acceptance by type of trait shows there is a high acceptance of modification for serious health conditions and a high non-acceptance for modification of aesthetic traits.
82% of participants feel a strong acceptance for modification of Genetic Disorders.
61% of participants felt Aesthetic traits should not be modified.
64% of participants show acceptance for modification of Chronic Conditions.
Cross Method Insight
By changing the timeline and social driver in the generative envisioning, participants interacted with the problem, with seemingly different perceptions. Participants reacting more positively to the possibility of the technologies use in a foresight exercise. This shift in the context created a change in perception.
This shift, the researchers identified, was a change in bounded rationality and perhaps could indicate a shift in mindset or paradigm, given the right conditions.
Our working model for approaching both methodology and analysis is shaped as a diamond that represents both a divergence and convergence of social values, opinion and understanding over an undefined increment of time.
TITLE OF THE CALLOUT BLOCK
POLICY DESIGN FOR SYSTEMS CHANGE
Facilitating dialogue through ongoing research gives an opportunity for active citizen engagement, and for discourse to evolve when facing a controversial emerging technology.
While admittedly not fully articulated or tested with a large data set, our research indicated that despite early signs public alarm, an emerging paradigm shift is possible. Social norms, in this case, the norms surrounding perception of human genetic modification, are not necessarily resistant to change.
By using a systems framework to repeat an architected research and three horizons foresight methodology, researchers could actively orient to and measure all levels of the system. In creating the feedback loop required for leveraging the system itself to create goals and rules - not to solve - a method of incremental management to a wicked problem emerges.
This recommendation for research action is based on Lindblom’s “theory of Muddling through.” This process is in itself a form of incremental measurement because data is unknown until it is named, as a rule, goal, future possibility or a new normative value. As data emerges through generative cycles both domestically and globally, the feedback loop required for leveraging the system through shared goals and rules evolves.
The findings of this project were displayed in a Giga Map in order to visual explore all aspects of the research, and how they fit together in a cohesive way.
Giga maps are design tools; they form 'information clouds' which can inspire innovation from complex problems which have multi-variables and interdependencies. By visually keeping as many aspects of the problem in the visual 'cloud' as possible, a rich design space for ideas can form.
Graphic designer: Janice DeJong