Ethics, Engagement & Impact
NeuroSplice Human Practices
Dr. Joe Sabatino
Assistant Professor of Neurology (UCSF)
Why We Contacted Him
We sought Dr. Sabatino's expertise in MS immunopathology and T cell function—especially CD8+ T cells—to validate our biological rationale. We needed insight on linking soluble IL-7 receptor (sIL7R) modulation to autoimmune responses and to ensure our project was scientifically sound and current with immunological understanding.
What We Learned
The interview provided deep insights into the immune mechanisms driving MS and practical advice on experimental design. He emphasized the critical importance of robust controls and iterative experimental refinement.
How We Integrated the Advice
We incorporated a positive control into our fluorescence assay to strengthen reliability and establish a clear baseline. This improved our experimental rigor. We also adopted a more iterative approach, reinforcing the importance of resilience and adaptability in our research process.
Jake Oxendine
PhD Candidate, Pharmaceutical Sciences & Pharmacogenomics (UCSF)
Why We Contacted Him
We sought his distinct quantitative biology perspective on RNA assay design and clinical decision-making. We needed guidance on what a blood-based splice-isoform test should promise, what evidence physicians would accept, and practical matters like sample processing, pricing, and authorization.
What We Learned
Jake highlighted the challenges of RNA diagnostics (instability, cell composition variations) and the need for tests to be repeatable, sensitive, and specific. He emphasized the crucial need for ethical considerations, including data ownership and equitable access for marginalized persons.
How We Integrated the Advice
We directly linked our validation process to the characteristics he described (repeatability, sensitivity, specificity). We prioritized a low-cost, paper-based, freeze-dry approach to reduce cold-chain risks. We also incorporated his ethical suggestions (data-handling rules and plain-language authorization) into our documentation.
Community Practitioner (Anonymous)
20+ Years in Singaporean Community Health
Why We Contacted Them
To acquire an essential community health viewpoint on trust, access difficulties, and stigma reduction outside of typical hospital settings. We needed insights on how families deal with pediatric diagnostic processes, especially for low-income and non-English-speaking households.
What We Learned
The most practical way to expand reach is through a simple explanation from trusted community touchpoints, coupled with a basic blood or finger-prick test. Major barriers include stigma, financial hardship, and communication difficulties. Diagnostics must be applied appropriately and with candid communication that centers the patient.
How We Integrated the Advice
We started a preschool outreach initiative (illustrations, stories) to integrate community education. We re-confirmed a low-cost, paper-based prototype for low-resource contexts and implemented ethical standards: anonymization, transcript review, and explicit informed consent options.
Veteran Affairs Nurse (Anonymous)
30+ Years of Frontline Experience (VA)
Why We Contacted Her
To understand the operational constraints of the public sector, including scenarios like eligibility, cost navigation, and intake communication. Her viewpoint allowed us to evaluate NeuroSplice's explainability, dependability, and appropriateness for use in safety-net settings.
What We Learned
Inadequate explanations regarding delays or procedures (shipping, waiting periods) damage patient trust. Plain-language materials and stringent screening are necessary for justice without bias. She stressed the importance of precise deadlines and clear qualifying parameters for VA recognition.
How We Integrated the Advice
We created a permission brief and access criteria to clarify eligibility and data usage upfront. We established three key adoption signals to monitor: Time-to-result, patient awareness of the outcome, and successful handoffs to follow-up care, ensuring our process is transparent and reliable.
Integrated Human Practices: From Feedback to Function
How Society Influenced Our Project
The course of our activity is directly influenced by society. Interviews with community workers and medical experts revealed systemic barriers to equitable access to healthcare. These difficulties include discrepancies in insurance and costs, as well as linguistic and cultural stigma. These realizations forced us to give cost, usability, and cultural sensitivity top priority in both design and communication. Our scientific approach was influenced by knowledgeable neurologists and researchers who reminded us that every diagnostic tool must clearly state its purpose, whether it is a screening or confirmation test, and meet strict standards for repeatability, sensitivity, and specificity. Instead of designing NeuroSplice as a lab experiment, we collaborated with patients, nurses, educators, and scientists to create a socially responsive technology.
How Our Project Affected Society
By utilizing our technological device as a low-cost, paper-based screening that primary-care and community clinics can perform without specialized equipment, our project, NeuroSplice, has an impact on society by enabling earlier referrals and faster, clearer triage, particularly in underserved and rural communities. This approach lowers wait times and expenses, lessens disparities, and gives patients and their families a clear understanding of what to do next. As demonstrated by our previous preschool program, visual explainers reduce stigma and foster trust, while our guidelines for permission, privacy, and fair use shield communities from the exploitation of data. In general, our approach promotes more equal access, earlier care, reduced anxiety, and a health system that allocates resources where they are most needed.
Ethics and Stakeholder Input Guiding Our Purpose, Design, and Lab Work
To make ethical and user requirements non-negotiable design inputs, we implemented a systematic four-step Human Practices procedure: Recruitment → Informed Consent → Interviews & Coding → Integration. Each participant completed a consent form outlining their data processing and privacy; two asked to remain anonymous. We provided transcript review and withdrawal, restricted access to de-identified records, and did not collect any PHI. Responsible behavior in the lab was anchored by these commitments, as well as UC Berkeley EH&S procedures and controlled waste disposal.
Purpose
We built NeuroSplice around the ethical goals of equity, transparency, justice, and beneficence. Feedback from community and clinical partners reminded us that cost, clarity, and trust were as important as scientific accuracy. This reinforced our decision to design a diagnostic that doesn’t require cold storage or complex instruments.
Design
Stakeholder advice directly influenced how we communicated our science. We created clear, step-by-step instructional materials to identify and reduce barriers faced by marginalized groups, evaluating each design change for its social benefit and potential risks.
Experiments & Safety
All lab work followed UC Berkeley’s EH&S guidelines. We minimized biological risk by handling all reagents in a closed, freeze-dried system. Ethical treatment included explicit informed consent options (anonymity, transcript review) for every participant.
Cultural Awareness
Consultations showed trust and local knowledge strongly shape healthcare access. In response, we expanded our outreach to schools, clinics, and social care facilities, ensuring NeuroSplice is a human-centered approach with compassion for the community.
Design Changes Based on Feedback (Integration Summary)
| Theme | What We Learned | Design or Process Change | Outcome |
|---|---|---|---|
| Accessibility | The community practitioner explained that many families lack awareness of neurological health and that medical language can feel intimidating. | Planned community-focused outreach emphasizing mental and brain health education. Organized a preschool outreach in Singapore to simplify ideas about the brain through storytelling with an interactive storybook presentation. | Communicate complicated biological ideas simply, using visuals and stories instead of jargon. It directly shaped how we now present NeuroSplice to non-scientific audiences. |
| Communication | Patients often lose trust when test results take time or aren’t clearly explained. Transparency and empathy are essential in healthcare communication. | Developed wiki sections with a more simplicity in language and outreach slides that explain how NeuroSplice works and how they could improve healthcare. | Encouraged us to prioritize trust-building through open communication and to explain diagnostics in a way that feels human-centered, not purely technical. |
| Cost and Fairness | Financial thresholds and insurance gaps block access | Reinforced focus on low-cost, paper-based, cell-free format | Keeps test affordable and suitable for low-resource settings |
Document Thoughtful and Creative Approach: The "My Busy Brain" Outreach
We brought our original children’s book “My Busy Brain” and poem “Busy Busy Brain of Mine” to the Early Learning Center at Singapore American School as part of our Human Practices outreach. Our goal was to teach preschoolers about the brain in a way that was fun, kind, and easy to understand. Using colorful illustrations and a short sing-along, we explained how the brain controls thoughts, emotions, and actions, and emphasized that everyone’s brain is unique. Through the story and song, the children learned that taking care of their brains (by getting enough sleep, eating well, and staying curious) helps them learn and feel good. We also talked about supporting people whose brains work differently, showing that patience and kindness make a big difference. This outreach shaped how we communicate our project to the public. Teaching complex biological ideas through storytelling showed us how powerful simplicity and empathy can be. It helped us make our educational materials, wiki sections, and outreach slides more visual and accessible, so anyone, regardless of age or background, can understand what NeuroSplice does. The experience reminded us that science communication should always be compassionate, inclusive, and centered on people, not just technology.