Team:SDU-Denmark/Human Practices
Overview
The prostate is a reproductive organ that produces seminal fluid. The risk of prostate cancer increases with age and in men above 65 years of age, the incidence rate is nearly 60%[1]. It is often said that men more often die with prostate cancer than because of it. This, however, is a somewhat laissez-faire approach, and it undermines the incitement for catching the malignant cases early.
Prostate cancer that’s detected early – when it’s still confined to the prostate gland – has a better chance of successful treatment[1].
In Human Practice, we are looking for why early diagnosis is important. We also ask end-users if there is a desire for an alternative prostate cancer test. Is it even good for them? And what do experts believe? In many ways, our iGEM-journey ranges from small to large, from bacterias to human beings, from test kits to health policies, and from relations to ethics.
Read the 15 steps below for a detailed introduction to our work in Human Practice, which also specify how our findings have shaped our project until the very end:
A deep sprouty forest set the scene for our initial ideation processes. Here we spent a weekend together brainstorming, sensing each other's academic competences, having fun and at last steering into some common grounds for potential projects ideas. The weekend was important for team development and we were lucky to conduct the trip just a few days before the world went into lockdown. Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
broad spectrum of interests reflecting
broad spectrum of team members
grounds for further research.
After the weekend in the forest and further research on the most potent project ideas, Patricia Wolf planned online brainstorming sessions for us. She assisted us with her expert guidance on innovative project development and set the scene for novel discussions on our project ideas. With every team member on board, this was when we decided to develop a prostate cancer self-test. Ethical challenges, late detection and uncomfortable diagnosis procedures with the established PSA test were driving forces for a project decision that every team member could see their potential unfold within!
Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
problem-solving approach to deciding on project topic.
By specifying our project idea, we were able to direct our research further on social and ethical factors concerning the established PSA test as well as how our alternative test idea can outperform the existing one. We consulted with Søren Harnow Klausen, professor of philosophy at SDU, to gain knowledge of how and if our idea will be good for the world. He guided us to direct our awareness toward the epistemological discussion on “the right not to know”, thus creating a foundation for our further engagement with stakeholders. Key challenges on the existing PSA test as well as our test idea were revealed, such as overdiagnosis, specificity/sensitivity, and revelation of test results. The article “Reflective Equilibrium & Prostate Cancer” summarizes this research, which we sent to the Danish Yearbook of Philosophy, doing a theme on the relationship between society and the individual. Here it reached the review phase but was (sadly) rejected. Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
being a pragmatic argument in its core, the article shows the grey zones between knowledge and ethics; in short, what we do with what we know
serving as a navigator for further stakeholder engagement.
With a fundamental understanding of the challenges within diagnosis procedures, we wished to unravel further possibilities and challenges in the specific case of a prostate cancer diagnosis. Palle Jörn Sloth Other is a urologist currently occupied with the improvement of the established PSA test, and he advised us to renavigate our idea of a self-test to rather focus on the test distinguishing between malignant and non-malignant prostate cancer as well as the accuracy. He was also concerned with the idea of being a self-test, which led us to reopen our initial project idea and leave it up to later decide whether it is a self-test or a clinical test.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
reopening our initial idea and defining a hypothesis for further stakeholder engagement investigating whether it should be a self- or clinical test
Along with preliminary expert engagement we designed the framework for how we wished to engage with potential end-users throughout the project. This was possible with the help from Thomas Kaarsted, who introduced and facilitated a debate on the citizen science mentality in science. We understood that we are nothing without the public! Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
“we are nothing without the public” // creation of foundation from which we engaged with the public via qualitative interviews as well as science communication
The arrangement with Thomas Kaarsted resulted in different strategies of public engagement. Except for a strategic framework for gathering qualitative data, this also included airtime on danish national radio and a gamification campaign. In an academic context, we also arranged workshops for ATU (Academy for Talented Youths). We arranged two events, specifically talking about our project and the iGEM-experience in general.
The first event was a rotary workshop, where three groups of about 5-6 students would learn about our Human Practice, Hardware, and Lab work. In Human Practice, a general introduction to the philosophy of science, the value-free ideal, and the difference between induction and deduction, was put in relation to our project. In Hardware, the youths got to try a 3D-printer, learned about idea development, and how to bring in considerations of end-user experience. In the lab, they got to try to grow bacteria and estimate the growth rate. The second event was an in-depth explanation of our project. Here we showed what we do in iGEM, and the youths tried how it is to work in the lab!
Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
inspiration for future iGEM'ers as well as utilizing our tools in relating science to the public
With an establishment of preliminary expert insights, the scene was set to involve end-users to understand desires in a prostate cancer test. The lock down in Denmark was finally over, and we were eager to engage with the actual society. Following the danish health authorities’ guidelines we decided to conduct focus group interviews with respect to social distance regulations. However, the corona situation showed to be unstable, which led us to transition to 1-on-1 interviews.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
design of end-user involvement strategy
Alongside design of end-user involvement, including the transition to 1-on-1 interviews, we facilitated a structured on-going correspondence with experts. On top of end-user involvement, we ensured a holistic engagement as the experts have varying academic backgrounds in relation to prostate cancer. Via initial expert outreach we were able to construct the interview sheet targeting the most important factors concerning our product idea. These being false positives, over-diagnosis and epidemiological factors. Additionally, it opened for queries of proposed implementation - is the best use of an alternative prostate cancer test best fitted for screening, diagnosis or something else? Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
constructive criticism of initial project idea // implementation insights
After deciding to transition to 1-on-1 interviews, we aligned our engagement with the participant’s safety preferences as our utmost priority. Lucky enough, this actually made us realize that Zoom was an exceptional tool to engage with end-users worldwide!
We constructed a semi-structured interview guide anchored in a citizen science mentality. With a citizen science mentality, we strived to facilitate a power-free space between us as academic students and the involved end-users being the public. We maximized the possibilities of our team being multinational by recruiting a multinational range of interview participants. Five team members conducted 10 interviews in each their mother language, which we analysed together to ensure a broad spectrum of knowledge.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
relative positivity towards a self-test // with the experts concerns in mind both interviews ventured the project into a side-project in lab // taboo and discomfort revelations
Since the experts expressed skepticism towards our initial self-test idea, we re-navigated our target area and ventured into a side-project exploring the cas-12a systems ability to detect predisposition for aggressive prostate cancer. Thus, serving as a guidance tool. This choice also restricted our focus of the original self-test idea to remain upon differentiation between malignant and benign prostate cancer non-invasively. As such we can meet the concerns from the experts, but also oblige to the desire that the interviewees expressed now with two tests; Prostate Malignancy Test (PMT) and Congenital Risk Assessment Test (CRAT). Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
expert and end-user insights resulted in the development of a guidance tool on top of a diagnostics tool // eliminate non-aggressive cancer cases in a potential screening program and/or diagnosis procedure and thereby elevating life quality.
With profound knowledge gained from expert and end-user engagement as well as implementation of a venture project we had capacity to start prototyping. Across hardware, human practice and laboratory subgroups we utilized each of our skills. Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
employing each department’s knowledge, we found that designs for both PMT and CRAT is feasible since different needs must be met.
By this time we have understood the pit holes and opportunities our projects involve. Louise Helskov Jørgensen held a presentation and afterwards facilitated a discussion with us upon implementation possibilities. This with a focus on how our tests can work within screening and diagnosis procedures.
Although the problems of false positives and negatives have been considered throughout the project, Louise helped with some expert elaboration on the essential necessities for a test. She gave a great insight on what demands a test must meet in order to be implemented. This was a major inspiration for the Proposed Implementation-part.
Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
screening and diagnosis procedures //
providing us tools being able to propose implementation strategies
Insights from Louise Helskov Jørgensen and especially Dr. Divya, US, formed a synthesis from which we could propose implementation strategies for both private and public health care systems. Accordingly, we considered implementation strategies from both a hardware and human practice objective and can be read more about in both the Hardware and Human Practices Proposed Implementation. Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
application of overall findings
During our project we partnered up with Rochester, in which it was clear that both our projects face struggles with taboos and detection. This allowed exchange of inspiration, support and expert knowledge. In a synthesis of this and insights from end-user involvement we were capable of producing an awareness campaign about andropause (the male climacteric age) and the prostate. Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
Understanding from the end-user involvement that early detection of malignant prostate cancer is not just a case for a medical practitioner we also wished to create awareness on men’s mental and social condition
Understanding from the end-user involvement that early detection of malignant prostate cancer is not just a case for a medical practitioner we also wished to create awareness on men’s mental and social condition. This led us to produce informational brochures including conversation starter-cards, a card game called Early Detection, a deck of cards including facts about men’s health and at last toilet paper with the message “How’s your prostate today?”. Read more here.
KEY INSIGHTS WE INTEGRATED IN THE PROJECT:
Understanding from the end-user involvement that early detection of malignant prostate cancer is not just a case for a medical practitioner we also wished to create awareness on men’s mental and social condition
References
[2] McIntyre KE, Laugh K. Toward a clearer conceptualization and operationalization of solutions journalism. 2019 Jan 3; Available from: https://journals.sagepub.com/doi/10.1177/1464884918820756#articleCitationDownloadContainer
