After an illustrious academic career spanning 5 decades, 4 of them as Chair, initially at the Department of Surgery at Aga Khan University (AKU), Karachi, then at CBEC, Dr. Farhat Moazam has stepped down to pursue working on her long-deferred book. She leaves behind an indelible mark in the shaping of bioethics in Pakistan.

On March 1, 2026, she passed the baton to Dr. Aamir Jafarey, a founding faculty of CBEC. A general surgeon by training, Dr. Aamir has been involved in bioethics since 2001, initially at AKU and then at CBEC. He has played a pivotal role in developing CBEC’s academic programs and leading ethics capacity-building initiatives nationwide. Since 2017, he is also Co-Director of the CBEC–KEMRI Bioethics Training Initiative (CK-BTI), a collaborative program between Pakistan and Kenya. The Centre looks forward to continued growth under his leadership.

Having spent 22 years within the SIUT cluster of buildings in old-town Karachi, CBEC has now moved into the SIUT Trust Hospital (formerly Regent Plaza Hotel). While the purpose-built structure is still under construction within the same building, the Centre is temporarily located on the 8th floor, overlooking the city’s carotid artery, Shahrah-e-Faisal.

This relocation marks a significant transition for the Centre, involving tremendous effort. This process was spearheaded by the Centre’s staff, Mr. Tariq Maseeh and faculty member, Mr. Farid bin Masood. While the dust has not quite settled yet, these images offer a glimpse into the process of moving and beginning a new chapter in CBEC’s journey.

While observing undergraduate dissertations, I noticed a concerning pattern. Research ethics is often treated as a mere footnote in the curriculum of research methodology, merely a slide or two during the whole semester. This results in students being completely oblivious to ethical concerns in the research they plan and how they execute it.

I reached out to the Centre of Biomedical Ethics and Culture (CBEC). Their faculty members, Farid bin Masood and Sualeha Shekhani, led our students through ethical issues that can arise in conducting research in disciplines across social sciences. Conducted on April 20 at CBEC, the workshop pedagogy was collaborative, a blend of interactive lectures and small group case discussions. This experience has oriented students with the sensitivity required to work on their dissertations during their final year. Student feedback indicated that they appreciated the interactive nature of the workshop, particularly small group discussions. However, they preferred shorter sessions spread across multiple days.

To examine the current state of health research and research ethics in Pakistan, we interviewed four experts with more than two decades of experience in ethical review. All have served on the National Bioethics Committee for Research (NBC-R).

We conducted semi-structured interviews with each expert. Lasting for approximately 30 minutes each, these focused on exploring their experience in reviewing health research at the national level. All four conversations were recorded, transcribed and subsequently transformed into the versions presented below. Concerns that emerged consistently across these four are summarised at the end.

Reinventing the Wheel
Saima Perwaiz Iqbal
Chair, NBC-R (2019 – 2026)

One of the biggest ethical concerns for me is the problem of over-researched communities. Funding comes in for specific segments of the population for decades, but nothing really changes on the ground. Similar research questions are studied again and again, and researchers often fail to do their literature review correctly or refer to what was previously published about the very same communities they are studying. Yet again, this repetition and disconnect weaken both the ethical value and the scientific value of what is being proposed. Our communities should not simply serve as a resource of sick populations. Once people are treated merely as objects, data, or populations, something fundamentally human is lost.

Over the last decade, we have seen a splurge of research, particularly university- led research. My concern is not simply whether people know how to write a proposal, but whether they actually know how to navigate and conduct this research on the ground. This increase in global health research is tied to the fact that we are much more connected with the world. Pakistani scientists sitting abroad find it easier to conduct post- grad research within their home countries, and significant funding is pouring in. Yet repetitive research questions continue to receive external funding mostly because of networks and trust. Researchers at the top are often just a network of friends, and funders give money to those they trust will deliver results and produce data. That same data is then recycled to secure more funding.

Therefore, as reviewers, we are becoming much more critical of external funding. We have to ask why the money is pouring in, what strings are attached. That is why the NBC has started questioning PIs more carefully. This is one reason I think we need to stop relying entirely on funding from abroad and change our mindset. We need to develop an infrastructure in which local communities, institutions, and local industries invest in research, and we need our own national and local funds to solve problems within our own communities.

Misalignment in Research, Policy and Community Realities
Jamshed Akhtar
Member, NBC-R (2015 – 2026)

When I reflect on the state of health research in Pakistan, I do not think it has evolved significantly. The same issues from when I first joined the NBC in 2015 are still present in 2026 and the research is still dominated by almost the same institutions. The issue, in my opinion, is what I have observed for years: research, policy, and community realities are misaligned.

This disconnect is visible in methodologies. While topics might be relevant to Pakistan, frameworks and tools are often borrowed from Western contexts without adjustment for local cultural realities. Another distinct issue is that the same populations are repeatedly studied across different types of studies such as clinical, qualitative, and quantitative trials without any tangible benefits to the community, for example in terms of improvement in health outcomes. The same questions such as reproductive health or neonatal mortality are studied repeatedly despite abundant existing data. Researchers establish a presence, extract data, and leave without delivering meaningful change. This is because research today has become an industry driven by visibility and institutional incentives, rather than a means to deliver actual impact on the ground.

Researchers often defend themselves by claiming that policy implementation is not their responsibility. I believe they still carry a moral obligation. Many serve as advisors to the government on various committees and bodies. They cannot claim neutrality while actively influencing discussions. Unlike fleeting political governments, researchers remain constant, giving them a greater responsibility to translate work into policy. What researchers end up doing, following data collection, is keep repeating recommendations that ignore ground realities, such as advising people to boil water without considering the economic burden of rising fuel costs that make it impossible for communities to access clean water.

Responsibility to make an impact, however, is shared among researchers, policymakers, funders, and communities. The solutions are already known, but governments fail in execution, communities lack the means to change, and researchers focus on publication over impact. Even when some research successfully informs policy, such as the Lady Health Worker program, its weak execution does not result in long-term benefits. This is reflected in high maternal mortality and persistence of preventable neonatal infections in Pakistan.

Looking ahead, I see these concerns intensifying with AI and big data. Technology brings opportunities like telemedicine and Al-assissted diagnostics, but also grave risks: data misuse, reliance on foreign software, misrepresentation in global datasets, and community stigmatization. We are not sufficiently prepared. Without indigenous systems and stronger regulatory frameworks, we remain vulnerable.

Health Research or Research for Health?
Aasim Ahmed
Chair, NBC-R (2010 – 2018)
Member, REC, Médecins Sans Frontières

At the turn of the 21st century, large funders of research, especially institutions like the National Institutes of Health-US, were giving grants for capacity development in research ethics in LMICs. Different organizations from the USA and other Western bodies came in and national research ethics capacity got developed in different countries. Eventually, NBC was formed with a major mandate for research, and that is how the whole system began. Part of that sounded genuine, because if research was being done somewhere else, then perhaps research needed to be done here in Pakistan as well.

But what happened over time was that this became a kind of economic exercise. Foreign -funded research is being welcomed because it brings in money. I have joked in several meetings of ethics committees that instead of this being a research ethics meeting, it feels like an economics meeting.

If you ask me what has changed over the years, I would say something simple: we keep doing health research, but we hardly ever do research for health. The research that comes to us for review is usually shaped by the priorities of the donor, not necessarily by our own priorities. I do not know whether we have ever had a mandate to say clearly that these are our priorities: maternal health, child health, communicable diseases, etc.

For me, the larger issue is who sets the agenda. If the research agenda is set by the Global North, then it will never be the same agenda that we need. The Global South needs clean drinking water. If you separate the gutter line from the water line, you will do away with five kinds of vaccines. But who gives money for that? Research priorities become global priorities only when they matter to the North. Dengue becomes a priority when it gets closer to Europe and North America due to climate change, and Ebola becomes urgent when Americans get infected. A lot of research on diseases that are endemic to the South is not done because the South needs it; it is done because the North has some vested interests.

We cannot go without the money, because money is needed for research, and our institutions are happy if some money improves the hospital or research site. But if we do not ask what the right thing to do is, we will continue to speak the language of ethics while actually functioning as an extension of the funding entities, driven by external priorities that do not begin with what people here in Pakistan actually need.

Moral Agency Can Reclaim the Research Agenda
Aamir Jafarey
Member, NBC-R (2014 – 2021)

There are two aspects of the ethical issues in health research review in Pakistan. One is the procedural aspect, and the other is the conceptual aspect.

Firstly, there is a wide variation in the quality of review at the level of institutions. Every institution has an Ethics Review Committee (ERC), but there is no standardization. This could be a two-man committee that sits over a cup of tea and passes everything, or it could be something that meets sporadically. You do mechanical things, tick boxes, and look at the translation of the informed consent. ERCs are regarded as a hindrance to research, very rightly so, in Pakistan, because of this haphazard nature.

But more importantly, what kind of research are we doing? Our researchers are basically dependent on where the funding is available. It is the tail wagging the dog. Our research agenda is not originating from a community to look at its needs. We are looking at things that are more attractive for the funding agencies, because there is a pill or vaccine that cures everything. However, things like why malnutrition is still a major issue, or why infant mortality is the worst in Pakistan among LMICs, are not funded because they are not attractive enough to be funded.

Doing meaningful research is dependent on the moral agency of researchers rather than only the regulatory system itself. Doing it correctly is vital because nobody [including ERCs and Data Safety and Monitoring Boards (DSMBs)] can monitor everything in the field. Our communities are, by and large, more vulnerable because of their illiteracy, their lack of healthcare, and because of therapeutic misconception. They feel that this (through research) is the only healthcare that they will get. The aura of the white coat is tremendous. Therefore, the responsibility on the man or the woman donning that white coat should also be reciprocally greater. The internal monitor of the individual doing the research will help in the ethical conduct of research on the ground.

Therefore, ethical research is only possible if this becomes a chain of moral agents starting from data collectors to principal investigators. The job of the moral agent starts with choosing the right research topic and moulding the research agenda to impact upstream non-fundable areas.

Too often, research funders decide the agenda. One way to minimize the impacts of the funders is to do what we [medical field] have done with pharmaceutical funding. We raised ethical questions around physicians getting direct funding from pharmaceutical companies. We can create similar noise around receiving funding from certain agencies that do not let us decide our own research agenda. The institutions can get funding for research, but pooling all the funds together and using them at their own discretion, according to the local agenda, would minimize the impact.

But the institutions and researchers have to be very strong to do that. This is because the funding agency may also say that they will go to the next institution if you do not agree to their demands. Local institutions will then have to come together and draw the line. Keeping this process clean and raising enough conscience will take time and determination from the researchers to act as strong moral agents.

Key Systemic Issues Raised

1. Similar research questions are repeatedly investigated, limiting the potential societal value and impact of research.
2. Research priorities are often shaped by donor interests, predominantly from the Global North, rather than local needs, with funding favouring topics that are fashionable, marketable, or commercially attractive.

3. Even when addressing local issues, research frequently relies on imported frameworks that overlook the socioeconomic realities of communities, resulting in findings that are rarely translated into policy or practice.

4. Communities in Pakistan are vulnerable to exploitation and therapeutic misconception, with some populations repeatedly studied through extractive research approaches, raising concerns about over-research and inequitable benefit sharing.
5. While institutional research ethics governance structures exist, the absence of standardised processes leads to considerable variation in the quality and rigor of ethics review across Pakistan.

CBEC-SIUT has initiated a series of capacity-enhancement activities with Synapse, Pakistan’s Neuroscience Institute. The institute, established in 2021, provides multidisciplinary services in the areas of mental health and neuroscience, bringing together expertise from a range of clinical and allied disciplines. CBEC is engaging with Synapse through two initiatives:

Establishing a Research Ethics Committee (REC)

To support the establishment of a Research Ethics Commit-tee (REC) at Synapse, CBEC faculty members Dr. Aamir Jafarey and Ms. Sualeha Shekhani conducted two work-shops on June 6 and 13 (picture below from June 6). The workshops provided participants with an overview of the importance of ethics governance and the role of institutional ethics review in promoting ethical research practices. Twelve participants from a wide range of disciplines attend-ed each workshop. The sessions, using cases specific to mental health research, focused on the development of robust governance structures, ethical review processes, and institutional mechanisms that are responsive to the organi-sation’s context and research needs.

Sessions: Ethics in Mental Healthcare

During Synapse’s summer internship with high school and undergraduate students, CBEC was invited to lead sessions across three internship batches (picture above from the first batch). The sessions, led by Mr. Farid bin Masood and Ms. Sualeha Shekhani focused on informed consent, confidenti-ality, and decision-making in cases involving impaired capacity. Using mini-cases, participants reflected on the ethical tensions between patient autonomy and the use of coercive interventions in psychiatric care. The workshops also introduced ethical considerations in mental health research, including protections for vulnerable populations, and the risk of therapeutic misconception.

Over the past decade, I have been involved in bioethics teaching, particularly through research ethics workshops conducted across Pakistan. During this time, I have become increasingly uncomfortable with the trends shaping global health research in the country.

Ethical review processes, as they have evolved over the decades, centre on procedural compliance. These tend to ensure that informed consent documents are adequate, that confidentiality safeguards are in place, and that the potential benefits of research are weighed against possible harms. Research is often justified in the name of the social value of research or for the greater good.

However, in practice, the “greater good” often never materializes. Across decades of health research in Pakistan, there appears to be a recurring pattern in the types of studies conducted: repeated trials in similar communities, addressing similar conditions, often with marginal variation. These include randomized placebo-controlled trials assessing the effectiveness of micronutrients for malnutrition, large-scale surveys on immunization coverage and its barriers. Increasingly, technological interventions are tested, promising cost-effective solutions to complex, structural problems such as the management of non-communicable diseases in disadvantaged populations.

I have increasingly grappled with the realisation that such research remains morally problematic. I find myself uneasy when granting ethical approval to studies that promise “more robust data,” despite knowing that in the past such data has rarely translated into meaningful health policy. These studies adhere to checklists and meet all ethical requirements: consent processes are sound, conflicts of interest are minimal, and minimum harm is promised to participants.

However, such processes often overlook a substantial harm being created: the erosion of trust in the research enterprise, once regarded as a public good. This harm also includes loss of dignity experienced by participants whose repeated involvement yields little tangible benefit for themselves or their communities in the foreseeable future. More worrisome is the gradual loss of moral sensitivity among researchers, for whom participants risk becoming mere data points.

Critiques of research ethics as overly procedural are not new. Governance mechanisms such as Institutional Review Boards and Data Safety and Monitoring Boards have long relied on rule-based compliance. While such compliance is necessary, it alone remains insufficient. As Tom Koch argues in Thieves of Virtue (2012), IRBs have become “compliant partners in the research enterprise” (p. 244).¹

However, moving beyond procedural ethics requires acknowledging our complicity in reproducing these structural harms, and confronting more difficult questions. Why is a new study being conducted when similar data already exists? Investigators often justify this by pointing to the absence of data in a newer location, or the outdated nature of previous studies. Yet many social determinants of health, such as barriers to immunization, are slow to change, raising questions about the marginal value of repeated inquiry.

In a country where malnutrition is rampant, leading to widespread stunting among children, where the poor health of the mother will naturally translate into poor health of the newborn child, it is irrelevant to test the effectiveness of a new micronutrient. It is of little or no value to test how nutritional outcomes may be improved through modification of ingredients in a chapati. Such research approaches risk obscuring economic and social determinants of health.

During a workshop, a participant shared an incident that has stayed with me. Researchers had approached a community to explore how its members understood health and what improvement would mean in their context. At the door, one resident responded bluntly: “If you want to improve the health of our children, provide us with running water.” This remark was not rhetorical. Families in that area, living near a highway, had lost children, who were forced to cross a dangerous road daily to fetch water.

Researchers may respond to this by arguing that it is not their responsibility to improve socioeconomic determinants of health. But under such abject circumstances, one can, and ought to, question how research, no matter how methodologically sound or procedurally compliant it is, can meaningfully benefit communities or their future generations.

The real challenge, then, is not merely to refine ethical procedures, although that too holds considerable importance. It is to confront the substantive, more uncomfortable, largely ignored ethical question that lies beneath: should such studies be conducted at all?

Reference:

1. Koch T. Thieves of virtue: when bioethics stole medicine. Mit Press; 2014 Aug 29.

Writing this article feels like condensing my entire journey as a global health researcher into a thousand words. I start by asking a question whose answer I only discovered a few years ago: What is global health research, really? Typically, it has involved researchers from the Global North (GN) conducting  research  in  the  Global  South  (GS), travelling to the field site for a few weeks if needed. They are supported by local actors who are bestowed with the title of local Principal Investigator (PI), but the role is often reduced to that of a glorified data collector. I have been involved in projects where the study design was finalized before local teams  were  even  consulted,  with  our  role  limited  to translating  and  implementing  what  had  already  been decided  elsewhere.  While  an  international  partnership results in credibility within the local circle, it offers littleauthority to influence or shape the broader discourse.

Power inequities are also evident in access to resources and recognition. PIs in the GN typically have privileged access to datasets and lead authorship opportunities, supported by the dominance of English in the field. Even more importantly, the field depends heavily on funding from the GN. This dependence allows institutions in the GN not only to lead and design research but also to control its agenda. Local PIs, if they manage to secure a seat at the table, have toconform to the norms set by those in power corridors, which means upholding certain values even if they may conflict with their way of thinking, knowing, and being.

I have seen this top-down control reflected in the conceptualization of interventions in global health. Complex social realities are often simplified into technical fixes, designed by actors far removed from the lived experiences of the communities they aim to serve. These quick, “magic bullet” approaches strip us of context, treating our lives as if we exist in a vacuum, devoid of nuance. Health burdens such as maternal mortality are treated as logistical problems; for example, commuting innovations are hailed simply because they are funded by powerful philanthropic foundations in the GN, while ignoring that women may lack permission to leave their homes, have limited decision-making power, or, worse, be treated as disposable.

This   has   caused   much   dismay   to   the   clinical psychologist-practitioner in me, where taking decisions on the client’s behalf would be considered a gross violation of practice standards. Yet, in global health, we routinely design interventions for people rather than with them. The result has been decades of public health interventions that work on individual responsibility for behaviour change, often through community health workers making home visits, weakening systems when parallel agendas are run through existing structures (with greater power wielded by foreign funds), and neglecting the larger sociocultural context. I have seen community health workers advise mothers on nutrition in households that cannot afford diverse food, or lack access to clean water. No wonder, with a significant amount of funds flowing, Pakistan hasn’t seen much progress, for example, in reducing neonatal mortality.

However, for the past few years, I have seen the discipline moving toward a more reflective space that increasingly interrogates the political, historical, and ethical structures that shape it.  The  COVID-19  pandemic,  followed  by geopolitical  realities  including  the  genocide  in  Gaza, accelerated  an  already  emerging  discourse  on  the decolonisation  of  global  health.  This conversation has exposed persistent asymmetries in power, funding, authorship, and agenda-setting between institutions in the GN and GS. This academic discourse has emphasised that the discipline was birthed as a tool of the colonial empire, whereby local populations were surveilled to control them. While it has been great at untangling these historical realities, much of the current debate, led by those in the GN, has focused on critiquing these inequities and highlighting the influence of colonial hierarchies within research partnerships and knowledge production. Consequently, there has been a conscious attempt to shift visibility of local PIs, questioning who speaks at global conferences, who is named as an author, and who leads grants.

However, another challenge I observe is that, with greater access to funding and opportunities that the field in its current form offers, intellectuals in the GS can begin to lean toward thinking like donors. This results in them being content with generating evidence or simple fixes that do not strengthen systems or shift norms for sustainable change. Hence, I believe the conversation must move beyond identifying structural problems in the GN, toward asking for communities engaged not just as participants, but as co-designers of interventions, informing research agendas before funding calls are issued. In other words, striving for locally grounded research agendas and ethical frameworks that are responsive to the realities of our settings.

From the perspective of researchers and, importantly, institutions in the GS, this moment presents an opportunity not only to engage with the discourse and advocate for a greater share of the pie, but also to contribute new ways of thinking about global health itself. This includes how we lead, what we value, and how we centre the lived realities and dignity of the communities, rather than the researcher in the GS partnership. In this quest, we must not forget that our careers cannot come at the expense of the communities we claim to benefit.

Inevitably, the next question people ask is: But how do we begin? I have learnt that it starts with the self: interrogating the coloniality of our minds and questioning the norms and narratives. For me, this has also meant questioning why international publications are equated with impact, even when the communities see little meaningful change. Asking these questions has often received backlash from individuals and institutions who have benefited from the current system, as they naturally feel threatened. Being part of the change could mean giving up the power they have accumulated over the years.

This led me to question the structures that shape and incentivise our work. GN academia has trained us to believe that writing is the most effective form of change, placing those who are able to publish in ‘high-impact’ journals in authority to drive change. The truth is that designing interventions that truly serve our communities is a messy process because building trust takes time. Trust depends on the character of individuals, not on publications approved by editors, predominantly in the GN. It is built through repeated engagement, listening before prescribing solutions, and consistent presence.

In short, this self-interrogation must then extend to how we define our collective worth, because in the end, funding follows value. And unless we redefine what we value, we will keep reproducing the very systems we claim to change—albeit through different faces. Hence, change has to begin with the courage to resist the need for GN validation, breaking free from their criteria for measuring our worth, and placing the needs and dignity of communities at the center of our work.

Hybrid Practicum Research in Bioethics
4 Online Sessions 3-day physical workshop, Nairobi, Kenya

In an exciting new development for the CBEC–KEMRI Bioethics Training Initiative (CK-BTI), a hybrid practicum was conducted this year. The CK-BTI program has consistently adapted itself to meet the needs of participants. In previous years, the program had innovated itself through an increased focus on bioethics education. This time, the objective was to develop the skill set of the faculty involved in bioethics teaching within the CK-BTI program, and others supervising Master’s theses at two Kenyan universities, AMREF and Mount Kenya.

This practicum, conducted by Ms. Sualeha Shekhani and Dr. Aamir Jafarey, covered a wide range of topics. The sessions were focused on providing normative frameworks for bioethics research, understanding the importance of conceptual frameworks, and navigating the often-confusing terrain of methodologies versus methods in research.

The feedback was enthusiastic. Participants shared that, for the first time, they clearly understood the distinction between primary versus secondary research. They believed they were better equipped to support students through the entire research journey—from research question formulation to methodological alignment. Many described the practicum as a “missing piece” added to their supervisory toolkit. The added advantage was working on bioethics-related research questions, which were then mapped across the entire research lifecycle.

Certificate Course Scientific and Ethical Dimensions of Human Subject Research
7 Sessions (2 hours each), SIUT, Karachi

Recognizing the strong influence that scientific methods have on the ethical quality of a study, this course, under the CK-BTI program, targeted these interconnected areas. The catalyst for this course was based on gaps identified during Ethics Review Committee (ERC) proposal evaluations at SIUT, where residents often struggled with core research concepts, misused technical terminology, and encountered difficulties completing the ERC application form.

The course included trainees from different departments including Urology, General Surgery, Gastrointestinal Medicine, and Physiotherapy. The small group format of 24 learners created an engaging environment in which participants were encouraged to directly apply newly acquired concepts to their own research ideas. The course topics included developing original research questions, identifying independent and dependent variables, and constructing measurable objectives and hypotheses. Strong emphasis was placed on demonstrating how methodological choices shape ethical dimensions of research projects.

Participants asked thoughtful questions, discussed uncertainties, and often stayed back after sessions to explore their research ideas further. Participants appreciated the consistent feedback provided to them by the faculty. This initiative reflects CBEC’s ongoing commitment to strengthen the capacity for scientifically robust and ethically sound research within SIUT.