Week 1 HW: Principles and Practices

Question 1:

I propose a digital, governance-aware health data platform designed to support a population-level understanding of cancer and tumor prevalence in Iraq. At present, most medical records in Iraq are paper-based and fragmented across hospitals or retained by patients, making them vulnerable to loss and preventing the creation of a reliable national picture of cancer types, trends, and possible contributing factors. As a result, medical research, evidence-based policymaking, and long-term public health planning are severely limited. This proposed tool would not collect full patient records, enable diagnosis, or identify individuals. Instead, it would focus on aggregated, de-identified clinical and contextual data that can be used to understand broader cancer patterns while respecting patient privacy, consent, and cultural sensitivities. The primary goal of this platform is to address a critical infrastructure gap in Iraq’s health system by enabling ethical research and informed decision-making, while explicitly avoiding surveillance, stigmatization, or misuse of sensitive medical information. While neurological and psychological conditions represent equally serious challenges in Iraq, they are intentionally excluded from the initial scope of this design due to heightened ethical, privacy, and stigma-related risks.

Question 2:

Goal 1: Protect patient dignity, privacy, and trust The primary governance goal of this project is to protect patient dignity and privacy in a context where cancer remains highly stigmatized and medical ethics are inconsistently enforced. Given the absence of robust digital infrastructure and uneven adherence to confidentiality standards, there is a significant risk that sensitive health information could be misused, disclosed without consent, or lead to social harm. This goal emphasizes minimizing data collection, enforcing de-identification by design, and ensuring that patients and communities can trust that participation will not expose them to discrimination, blame, or loss of dignity.

Goal 2: Enable ethical, feasible research under limited resources A second key goal is to enable responsible cancer research in Iraq without creating governance barriers that make research impossible in practice. While strong safeguards are necessary, overly restrictive rules, lack of funding, limited governmental support, and dependence on expensive foreign technologies could unintentionally suppress research and innovation. This goal therefore prioritizes governance structures that are realistic for a low-resource setting, support researcher autonomy within ethical boundaries, and allow gradual capacity building rather than imposing idealized systems that cannot be sustained locally.

Question 3:

Governance Action 1: Privacy-by-design transition from paper to aggregated digital reporting (Technical + institutional action | Led by academic researchers and hospitals) Purpose: Currently, cancer-related data in Iraq is largely paper-based, fragmented, and vulnerable to loss or unauthorized access. This governance action proposes a transition from individual paper records to aggregated, de-identified digital reporting, enabling population-level insight while minimizing privacy risks.

Design • Hospitals and clinics report summary-level cancer data (e.g., tumor type, age range, region, and high-level risk factors where available). • No personal identifiers such as names, national IDs, or addresses are collected. • Data entry tools are designed to be low-cost, simple, and compatible with limited digital infrastructure. • Training emphasizes what data should not be collected, reinforcing privacy-by-design principles.

Assumptions • Aggregated data is sufficient to identify national cancer trends. • Healthcare staff can be trained to follow simplified digital reporting protocols.

Risks of Failure & “Success” • Failure risk: Limited technical capacity or staff resistance could result in incomplete or inconsistent data reporting. • Success risk: Even aggregated data could be misinterpreted or misused if governance oversight is weak.

Governance Action 2: Strengthened ethics enforcement and hospital-level conduct standards (Institutional rule | Led by hospitals, universities, and health authorities)

Purpose: Although ethical guidelines exist, they are not consistently enforced. This action aims to strengthen ethical conduct within hospitals, particularly around patient privacy, infection control, and respect for patient dignity.

Design • Establish clear, enforceable standards for: o patient confidentiality o limits on hospital visitors for immuno-compromised cancer patients o basic sterilization and infection-control practices • Ethics training is integrated into routine hospital operations rather than optional workshops. • Accountability mechanisms focus on institutional responsibility rather than individual blame.

Assumptions • Institutional enforcement is more effective than relying solely on individual compliance. • Hospitals have the authority to implement and monitor conduct standards.

Risks of Failure & “Success” • Failure risk: Standards may exist only on paper without consistent enforcement. • Success risk: Strict enforcement could be perceived as culturally insensitive if not accompanied by clear communication.

Governance Action 3: Community-centered cancer education and engagement strategy (Social and educational action | Led by hospitals, NGOs, and public health educators)

Purpose: In many rural and underserved areas, cancer and tumors are misunderstood, sometimes viewed as contagious or caused by moral failure. This action treats education as a governance tool to reduce stigma, misinformation, and resistance to ethical data sharing.

Design • Community education initiatives explaining: o what cancer and tumors are and are not o common risk factors (genetic factors, environmental pollution, viral causes, lifestyle and diet) o The importance of limiting hospital visits to protect patient immunity • Education delivered by trusted local healthcare workers and community figures. • No requirement for digital literacy or individual data submission.

Assumptions • Trust in local messengers increases cooperation and understanding. • Education can reduce stigma and harmful practices.

Risks of Failure & “Success” • Failure risk: Misinformation may spread faster than educational efforts. • Success risk: Communities may expect direct medical treatment or financial support beyond the scope of the project.

Question 4:

Option 1: Privacy-by-design aggregated digital reporting

Option 2: Ethics enforcement and hospital-level conduct standards

Option 3: Community-centered cancer education and engagement

Question 5:

I prioritize a sequenced combination of governance actions, rather than treating all options as equally urgent.

Governance Action 1 (privacy-by-design aggregated digital reporting) is the primary priority. It directly addresses the central problem identified in this proposal—the absence of reliable, population-level cancer data due to fragmented, paper-based records—while also providing the strongest protection for patient privacy and dignity. Without this ethical data foundation, other governance efforts would lack a practical and legitimate basis.

Governance Action 3 (community-centered cancer education and engagement) is prioritized as a supporting and parallel action. Public understanding and trust are essential for any data-related initiative to be ethically acceptable and practically feasible in the Iraqi context, particularly in rural and underserved communities. Education helps reduce stigma, misinformation, and harmful practices, and supports voluntary participation without coercion.

Governance Action 2 (ethics enforcement and hospital-level conduct standards) is recognized as critically important but is treated as a longer-term priority. Although it has strong potential to improve patient safety and ethical compliance, it depends on sustained institutional capacity, enforcement mechanisms, and governmental support, which remain uncertain in the short term. This prioritization reflects key trade-offs between ethical protection, feasibility under limited resources, and institutional readiness. It also acknowledges uncertainty regarding long-term enforcement and funding. These recommendations are intended for local hospitals, universities, and public health institutions in Iraq, as well as international academic and public-health collaborators supporting ethical research and capacity building.

Reflecting on this week’s class and assignment, one thing that really stood out to me was how easily health data initiatives can cause harm—even when the intentions are good—if governance is treated as something secondary rather than built in from the start. Before this week, I mostly thought of ethical risk as something tied to deliberate misuse. Working through this assignment made it clear to me that harm can also come from structural issues, such as paper-based systems, unclear responsibility, and weak enforcement, even when no one is acting maliciously.

I was also struck by the tension between protecting patient dignity and making research actually possible in low-resource settings. While strong safeguards are clearly necessary, overly idealized governance frameworks can unintentionally exclude researchers and communities that don’t have the funding or infrastructure to meet those standards. This reinforced for me the importance of privacy-by-design approaches, community engagement, and realistic, step-by-step governance strategies that build trust over time, rather than relying only on top-down rules.

AI Use Statement:

I used ChatGPT as a support tool to help clarify assignment instructions, organize my thinking, and refine the wording of my responses. All ideas, decisions, and final interpretations reflect my own understanding.