The term ‘Islamic Feminism’ gained currency in the 1990s as a label for a brand of feminist scholarship and activism that was associated with Islam and Muslims. There has since been much discussion and debate and a growing literature on ‘Islamic feminism,’ to which I have contributed. The difficulty with the term ‘Islamic feminism’ is that both of its components, ‘Islam’ and ‘feminism,’ are contested concepts that mean different things to different people in different contexts. Each is the subject of multiple discourses and widely ranging perspectives that can be addressed at different levels. We need to start by asking: Whose Islam? Whose Feminism? –  Questions that continue to remain unaddressed in most discussions on Islamic feminism.

I define ‘feminism’ in the widest sense – a concern with women’s issues, an awareness that women suffer discrimination at work, in the home and in society, and actions aimed at improving their lives. There is also an epistemological side to feminism which sheds light on how we know what we know about women, family and religious tradition, and law and practices that institutionalize patriarchy by taking their legitimacy from religion.

I distinguish ‘Islamic’ from ‘Islamist’ and ‘Islamism’. ‘Islamism’  I define as political commitment to public action to implement what Islamists regard as an Islamic agenda, commonly summarized in slogans such as ‘Islam is the solution’ or ‘return to Shari’a’. ‘Islamic’, on the other hand, when attached to an -ism such as feminism, means merely finding inspiration and legitimacy in Islamic history and textual sources.

When thinking and talking about Islam we also need to make another distinction, namely between faith (and its values and principles) and organized religion (institutions, laws and practices).There is a pervasive polemic-rhetorical trick of either glorifying a faith without acknowledging the horrors and abuses that are committed in its name, or condemning it by equating it with those abuses. Words such as din, as much as ‘religion,’ are ambiguous and can be hopelessly imprecise for the purposes of analysis. Similarly, the meaning of Shari’a is widely contested. For some Muslims, Shari’a has become synonymous with patriarchal laws and cruel punishments. For the Muslim masses, Shari’a is the essence of justice, while for Islamists Shari’a is a powerful political ideology. In Muslim tradition, Shari’a is a theological and ethical concept more than a legal one, associated with the sacred, denoting the totality of God’s will as revealed to the Prophet Muhammad. In my work, I have sought to keep the distinction between Shari’a (lit. the path) and fiqh (lit. understanding). While the first embodies the revealed law the second is the science of Muslim jurisprudence, human attempts to extract legal rules from the sacred sources of Islam and make laws that are mundane, temporal and local. Anyone who claims that a specific law or rule ‘is’ Shari’a is claiming divine authority for something that is in fact a human interpretation.

Two events in 1979 marked a turning point in the politics of relations between Islam and feminism. The first was the UN General Assembly’s adoption of CEDAW (the Convention on the Elimination of all forms of Discrimination against Women), which gave a clear international legal mandate to women’s rights as human rights. The second event was the Iranian Revolution, which brought an end to a US-backed monarchy and introduced an Islamic Republic that sought to reintroduce laws that conformed with traditionalist Islamic jurisprudence. Subsequent decades saw the concomitant expansion, globally and locally, of these two equally powerful but opposed frames of reference.

The human rights framework gave women’s rights activists, including those in Muslim countries, language and tools to resist and challenge patriarchy, and the idea that violence against women, rooted in traditions and religious practices, is a violation of their human rights. Meanwhile, Islamist forces started to invoke Islam and Shari’a as legitimizing devices to reverse the process of reform and secularization of legal systems. Their rallying cry of ‘Return to Shari’a’ led to regressive gender policies with devastating consequences for women, including the revival of tribal models of social relations. These developments widened and intensified the conflict between ‘Islamists’ and ‘feminists,’ and reignited old polemics between ‘Islam’ and the ‘West.’

However, the conflict between these bitterly opposed positions found a kind of resolution in the emergence of a new gender discourse that came to be called ‘Islamic feminism.’ The Islamists’ agenda of ‘return to the Shari’a’, and their defence of patriarchal rulings as ‘God’s Law’, had some unintended consequences. Not only did they bring classical jurisprudential texts out of the closet but they enabled a growing number of women to question whether there is an inherent link between Islamic ideals and patriarchy. Relying on the ethical and egalitarian spirit of the Qu’ran, these women saw no contradiction between their faith and their aspiration for gender equality. Paradoxically, political Islam gave them the incentive to critique the gender biases of Muslim family laws in ways that were previously impossible. Since the late 1980s, we have witnessed the emergence of a new brand scholarship from within the Islamic tradition, informed by a feminist analysis that is mindful of gender as category of thought.

Meanwhile, in the aftermath of the 11 September 2001 attacks in the USA, the politics of the ‘war on terror’, the illegal invasions of Afghanistan and Iraq, both partially justified as promoting ‘democracy’ and ‘women’s rights’ the subsequent revelations of abuses in Guantanamo, Abu Ghraib and Bagram, and the double standards employed in promoting UN sanctions, have all discredited international human rights ideals and feminism in the eyes of many. The gap between these ideals and the practices of some of their proponents have increasingly invited accusations of hypocrisy. As the first decade of the new century came to a close, both ‘feminism,’ now commonly identified with international human rights law and its politics, and ‘Islam,’ now often reduced to Islamists and their slogan of ‘return to Shari’a’, lost legitimacy and moral authority in many quarters.

It is against the backdrop of these developments that we should place the feminist voices and scholarship in Islam. Realizing the close link between religious and political identity in Muslim contexts, more and more women came to realize that there can be no justice and no sustainable change until patriarchy is separated from the Shari’a. To abolish patriarchal laws and customs among Muslims it is insufficient, and counterproductive, to attack these on human rights grounds alone. To achieve sustainable change injustices arising from patriarchal laws must be revealed as taking their legitimacy from a particular reading of Islam’s sacred texts, and offer defensible and comprehensible alternatives within a framework that recognizes equality and justice within Islam through interpretations of its sacred texts. Scholarship must join activism to bring together fresh perspectives on Islamic teachings, universal human rights principles, and the lived realities of women and men today, and to argue that equality in the Muslim family is now both necessary and possible, and that denial of this equality in the name of Islam and tradition should be firmly rejected.

This century has given birth to a new gender discourse that is Islamic in its sources of legitimacy yet feminist in its demand. A constructive dialogue between feminism and Islamic legal tradition has begun; but a true dialogue is only possible when the two parties treat each other as equals and with respect; otherwise it will remain a dialogue of the deaf. For those committed to justice for women there is no other option but to bring Islamic and feminist perspectives together.

Urdu Baithak is a public forum conducted by CBEC-SIUT focusing on various aspects of Urdu literature. This year’s Baithak titled “Resistance Poetry of Two Eras: A Dialogue” will bring together seasoned poets Iftikhar Arif and Harris Khalique.

Resistance literature uses artistic expression against oppressive power structures and dominant ideologies. In Urdu, poetry in the form of Marsiya or Sheher Ashoob has historically been the medium for this purpose. However, following colonialism, modern state structures and social movements, new forms of resistance emerged in contemporary Urdu literature.

Join us for an evening of poetry recitals by these two poets representing two different eras highlighting the evolution and differences across time. This will include a discussion between the two, moderated by CBEC faculty member Dr. Nida Wahid Bashir.

Iftikhar Arif is a poet, scholar, and critic who requires no introduction. For the past fifty years, his overarching presence on the literary landscape of Pakistan has left enduring traces of his style. His four volumes of poetry have recently been anthologized and some of them have been translated into several languages.

Harris Khalique is a multilingual poet, author, and a noted human rights campaigner. He has authored ten collections of poetry, which have been anthologized. His poetry has also been translated into several languages. He has two non-fiction books to his credit.

This session will be held at the Suleman Dawood Auditorium and also streamed on our Facebook page and Zoom. 

Wearing face masks for all participants in the auditorium is a mandatory part of the Covid-19 policy.

As always, the CBEC-SIUT event is free, but we require registration by phone (021-99216957) or email cbec.siut@gmail.com before August 29, 2022. 

To attend online, please register on the Zoom link below:

https://us02web.zoom.us/meeting/register/tZcpduCsqTMsEtfdjdaPBy2mH0Vvb7PBK36i

Centre of Biomedical Ethics and Culture (CBEC), SIUT

WHO Collaborating Centre for Bioethics,
Karachi, Pakistan.

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Kant famously said that the highest significance of beauty is to symbolise moral good, while for Schelling and Hegel the greatest revelation of beauty rested in the arts. The relationship between ethics and beauty is considered to be an old one, rooted in the thoughts of the philosophers of antiquity. According to Xenophon’s accounts Socrates equated beauty with goodness, while the wise man Confucius emphasised the role of arts in refining the human nature. To teach his students, Confucius, a highly demanding teacher, would ask his disciplines to read the “Book of Songs” (an ancient and highly revered anthology of poems in Confucius’ time) to discover the metaphysical and ethical issues.

The questions that troubled the thinkers of centuries ago, still confront us today. What is moral behaviour? What constitutes ‘right’ and ‘wrong’? Can these values be inculcated in an individual, and if yes, then how? Yet unlike the thinkers of antiquity, we have the additional challenge of globalisation and rapid technological innovations confronting us, which have caused a dramatic paradigm shift of values and knowledge. Knowledge accumulated over generations becomes quickly superfluous today; new skills have to be learnt which have no old wisdom to provide a framework: is it right of companies to monitor employees’ emails, should governments have the right to block material on the Internet? Issues like euthanasia, organ transplant and eugenics confront us more than ever before and in each field where technology has pervaded, such difficult questions abound. Globalisation has also meant that we are forced to live in harmony with people with different sets of norms guiding their understanding of right and wrong. The challenge poised by this is how to negotiate a space where the different sets of morality can co-exist? Should each culture and especially the dominant ones try to impose hegemony of their understanding of morality and ethics and is that a realistic possibility in today’s world? Or do we try to follow Kant in “Act only according to that maxim by which you can at the same time will that it should become a universal law.”

Today, maybe as a result of all these challenges, the wheel has turned a full-circle and the mainstream utilitarian, deontological and consequential theories of ethics have been followed by an emergence of a renewed interest in the Aristotelian-inspired virtue ethics with an emphasis on the building of character as a primary step towards propagating ethical behaviour. For if only “dos” and -don’ts” are taught as a rule to a child, then there is a high possibility that in the rapidly changing world, by the time she/he grows up, the conditions to apply the rules learnt would have changed. However, if in conjunction, a virtuous, empathic and creative personality is developed, she/he would have the flexibility to adapt to the changed world. If this is the case, inculcating a virtuous character should be a priority which should begin at early educational levels, and amongst several routes available, and undoubtedly the more enjoyable one for the child, is through the arts, inclusive of music, visual arts, theatre and literature (oral and written).

There are those who might wonder whether the arts can instill ethics in a person. How could drawing a painting, watching a play or listening to ghazal actually make a person more virtuous or derive ethical principles? The answer lies in the power of the arts to foster imagination, sensitivity and creativity: the ingredients necessary in the formulation of an empathic personality receptive to the issues and complexities of our world. Aesthetic pleasure is sometimes defined as empathic pleasure where the object and the subject merge: and empathy or more appropriately ‘Einfiihlung’ is the hallmark of creating or enjoying any of the arts (a major theme in the nineteen century German aesthetics). The concept of empathy is powerfully captured by the Romantic Movement poet Keats on seeing a sparrow outside his ledge, who wrote, take part in its existence and pick about the gravel”. While Byron echoed a similar sentiment, “‘I live not in myself, but 1 become/ Portion of that around me…”. One could even say that the application of Kant’s philosophical morality stance of “categorical imperative” requires imaginative projection. It seems there is a natural instinct in humans to turn towards the arts. Even the cave man, with his naïve and primitive understanding of the world, was attracted towards illustrating his abode. The danger is that if the higher arts are not provided at educational levels then people will turn solely to the cheap images flashed by the advertising industry and the soap operas and the mass conscience and values will be formed only by the images seen of television and the Internet. The values of the society would then not be shaped by the thoughts of leading intellectuals and creators but rather imbibe mediocrity.

This is not to assert that every person who has been exposed to the higher arts becomes ethically refined but it does mean that most of the people whose education includes art would have been provided with some of the key ingredients towards a personality type which is conducive towards ethics and vice versa. As articulated by Shakespeare in The Merchant of Venice, “the soul of a man without music is dark as Erebus (Greek god of darkness who lived underground), fit for treasons, stratagems and spoils, and no such man should be trusted.”

Even highly pessimistic philosopher Schopenhauer, whom Maupassant aptly called “the greatest shattered of dreams,” conceded and glorified the power of arts for its ability to achieve momentary deliverance from the destructive powers of the Will. Through the arts, without being burdensome, harsh realities of life can be communicated. Pablo Neruda’s poems became the soul of Chile, Mexican painters like Diego Rivera and Orozco effectively used mural to convey social injustice themes to the masses, Puskin’s poetry resonates within the Russian spirit, while for decades to come, protest against the havoc of war has been encapsulated in Picasso’s painting Guernica. It is important to note that the key element of the arts is that it is an enjoyable communication medium, which rests on the principle of harmony. Musical cords have to be in harmony as have to be the colours of a painting. This is its greatest merit, communicating even disconcerting thoughts while remaining harmonious. It can be said that society can inculcate morality and ethics through different methods. In the ancient civilisation, both the Spartans and the Athenians endeavoured for morality and ethics, but for the Spartans it was sans the arts while the Athenians embraced art.

Today we remember Athenians for their contributions to civilisation and democracy while the Spartan existence is disparaged. Historical choices often recur. Present society will have the choice to accept or reject the arts and its role in shaping the character of its people. It would be a pity not to utilise the full power of humanity’s artistic heritage to help improve the world of tomorrow. Today we have not one but many such “Books of Songs” but do we have the wisdom of Confucius to utilise them to teach ethics to those looking for the answers?

Join us for our upcoming CBEC Forum, which will feature some rare contents of the literary and cultural archival material preserved by Mr. Lutfullah Khan.

Mr. Lutfullah Khan (25 November 1916 – 3 March 2012) spent his lifetime collecting priceless treasures including recordings of renowned artists, poets, writers and other individuals from Pakistan and South Asia for future generations. This extensive Urdu archive, containing prose, poetry, music, discussions, recitations and more is perhaps one of its kind in the world. Starting in the early 1930s and going on until the turn of the century, Khan Sahib’s archive is currently located at the residence in Karachi, where he used to live.

Beginning with a brief introduction of Mr. Lutfullah Khan, this forum will introduce the attendees to this literary treasure and its contents, dimensions, preservation efforts, and future potential. A few rare recordings from the archive will also be exhibited during the session.

The session will be led by Dr. Khursheed Abdullah, a self-trained Urdu literature aficionado, who has recently begun a deep dive to explore the vastness of this treasure. He has been digitizing and uploading bits and pieces from these archives to his own social media platforms, making them more accessible to the common listener and enthusiast.

This session will be conducted in a hybrid format, with a limited number of physical seats at CBEC. Those interested in attending the session in person are requested to register by emailing cbec.siut@gmail.com before May 1, 2023.

To register for online participation, please click the Zoom registration link below:
Zoom link:  https://us02web.zoom.us/meeting/register/tZEqf-CsrDIjGtIzba7MiMoMkCvijA_Bczxn

This session will also be live-streamed on our Facebook page.

Regards,

Aamir Jafarey
Professor

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After a long time, CBEC faculty indulged in modern Urdu poetry in a Journal Club held on Thursday, June 16, 2022. Dr. Nida Wahid Bashir facilitated the discussion on two poems by internationally renowned Pakistani poet and critic, Harris Khalique. The first poem titled “Niamat Ullah Saeed Bangash” addressed the pain and guilt of oppression unknowingly committed by a professional, while the second poem titled “Salamat Mashki” was a comment on the existing discrimination in society. CBEC faculty appreciated the use of language and unusual sociocultural nomenclature in Harris’s poetry.

On June 23, 2022, CBEC organized a one day workshop focusing on academic writing skills for its faculty, alumni and healthcare professionals from the Sindh Institute of Urology and Transplantation (SIUT). Running a workshop on English academic writing skills had been on the faculty’s agenda for quite some time but this was the first formal full day event dedicated to academic writing held at the Centre.

For most Pakistanis who enter scientific professions such as medicine, writing skills tend to take a back seat. Even individuals who come from a background of the humanities or social sciences are not taught academic writing skills explicitly. Rather, they acquire academic writing skills through experience – or, if they are fortunate – through good mentors. An added layer of complexity for Pakistani writers is the challenge of converting their thoughts (which are generally in Urdu) into clear, comprehensible, written English.

Entitled “Basics of Academic Writing,” the June workshop was an attempt to provide participants with fundamental skills and concepts that could help improve their written work. The event was run by Dr. Shahid Shamim, Associate Faculty, CBEC, and Ms. Kanwal Zehra and Ms. Rabiya Khalid of Dow University of Health Sciences (DUHS), Karachi, both of whom have a background in linguistics and are currently pursuing their doctoral degrees. The workshop was attended by 18 participants on-site at CBEC.

The first session of the workshop, run by Ms. Rabiya Khalid and Dr. Shahid Shamim, aimed to help participants improve their academic writing by looking at sentences and paragraphs to identify issues with structure, coherence and the flow of ideas. Most participants seemed to find this a useful session, particularly as there were many opportunities for hands-on practice. Commenting on his writing skills, one of the participants (a clinician) remarked that the last time he had focused on English grammar and structure had been in middle school.

The second session of the workshop, conducted by Ms. Kanwal Zehra and Dr. Shahid Shamim, focused on critical reading and paraphrasing. While this session conveyed important points about understanding written material and incorporating it appropriately into academic writing, some of the information seemed to be more suited to reviewers of academic articles. Participants generally felt that despite hands-on activities, there was a lot of material and they needed more time and practice to absorb it.

The final session was dedicated to feedback on samples of participants’ written work but participants generally felt that the feedback was insufficient due to time constraints. However, they took away helpful information about the mechanics of writing, particularly in the first session of the workshop. Overall, the workshop was a useful learning experience for both participants and facilitators.

CBEC’s Postgraduate Diploma in Biomedical Ethics (PGD) opened new venues for discussion on ethics in patient-physician interactions, research, public health, media and industry. Being both a student in a diverse group, and a teacher of many health cadres, I had opportunities to reflect on situations from different vantage points.

I realized that the least explored perspectives were those of pharmacy students, who have a five months clinical clerkship as a requirement for a Pharm.D degree at our institution, the University of Swabi, Khyber Pakhtunkhwa. They are the most inquisitive about interactions with patients, but also the most naive about the workings of healthcare systems. In hospital settings, pharmacy students are not given much importance and their questions ignored – but I always find their queries very relevant.

In general, clinical ethics discussions revolve around patient-doctor interface and other players are considered less significant. But pharmacists are as important as doctors – be it in patient interaction or in human subject research. Particularly during COVID-19 vaccine trials, I observed that at many stations, research pharmacists had leading roles and were the key people answering questions related to vaccine development and side effects. I suspected that our pharmacy curriculum lacked depth and friends in the pharmacy academia confirmed that the clinical and research ethics components in their undergrad curriculum were rudimentary and outdated.

At this point, I made the ‘eccentric’ decision of focusing my PGD project on pharmacy students instead of the traditional doctors/trainees/nurses cohorts, with the intention of gradually developing it into a regular module in the undergrad pharmacy curriculum. I discussed my views with faculty in the Department of Pharmacy at Swabi University and they were enthusiastic. They agreed to pilot this module to final year students and submit it to the pharmacy council academic board for approval for future modules.

I can still recall the ‘huh?’ in my CBEC teachers’ response to the project, but they remained tolerant and supportive. During project sessions, my cohort was dedicated and interactive. The most memorable day was when my pharmacy students attended a hospital session run by an international organisation about an implementation research related to nutrition. The students challenged presenters about the consent form and its details, surprising both the audience and facilitators, leading to a decision to develop and share a comprehensive consent form before the formal start of research. I felt like my job was done and the message transferred.

The concluding day of the project was attended by faculty members from the University of Swabi and the Dean of the Medical College. They appreciated the project and showed their support by formally including the ethics module into the undergraduate curriculum.

I believe that biomedical ethics should be a mandatory component of pharmacy curriculums, moving us from physician-pharma relations to physician-pharmacist-pharma relations, and from patient-pharma interactions to patient-pharmacist-pharma interactions. This will have a positive impact on both clinical care and biomedical research involving pharmacists.

To watch video click here: https://siut.org/bioethics/perspective-1/

From June 2021 to March 2022, I conducted teaching sessions to introduce basic research ethics knowledge to community paralegals supporting key populations in Kenya. This project was a requirement of my Postgraduate Diploma in Biomedical Ethics (PGD) from CBEC. I decided to develop sessions for community paralegals as they have become invaluable in resource-limited settings by helping marginalized key populations navigate legal challenges.

Although they constitute a small proportion of the population, HIV prevalence among key populations is much higher – an estimated 33% as against the general population prevalence of 4.76%. Evidence demonstrates that key populations have limited access to HIV prevention and treatment due to stigma, social exclusion, and broad criminalization of their activities. The criminalization of high HIV-risk behavior, such as same-sex sexual conduct, sex work, and drug use in Kenya, raises unusual ethical challenges that also affect research.

10 male and 10 female community paralegals from 12 organizations providing legal advocacy to sex workers, persons who use drugs, and men who have sex with men across six counties in Kenya, enrolled in the project. A hybrid approach was used, combining virtual and in-person sessions. This enabled discussions on critical areas requiring ethical consideration in research on vulnerable populations, with discussions on the informed consent process eliciting the most interest. While acknowledging the complexities in determining decision-making capacity – particularly among active drug users – participants agreed that it was inappropriate to assume that all drug users automatically lack capacity.

Another area that was largely contested was the researcher’s reporting obligations in the context of at-risk adolescent involvement in criminalized activities. The majority felt that such disclosure would negatively impact trust and discourage access to health services. The issue of incentives for economically vulnerable key populations was also hotly debated. Participants also discussed the impact of cultural and legal perceptions on the review and approval of research on sex work, drug use and same sex conduct. Feedback from participants indicated that the use of case studies, short video discussions and interviews made the sessions engaging and relatable. Participants agreed that the sessions helped them appreciate their role in empowering a highly researched population and resolved to disseminate research ethics awareness through their work.

This project has inspired me to advocate for improved mechanisms at institutional as well as national regulatory levels to enhance protection of key populations in research. With 32 research ethics committees currently accredited in Kenya, we are now establishing linkages for community paralegals to get involved as lay members who contribute to an understanding of the unique contexts of key populations.

To watch video click here: https://siut.org/bioethics/perspective-2/

The biblical Solomon, a king of Israel and son of King David, was renowned for his wisdom, power and his fortune, often described as one of the largest in the ancient world. But while Solomon’s famed wealth is a story as old as the ages, the popular fascination with locating a portion of this fantastic fortune is a far more recent affair. The idea of mines full of riches was first introduced in the late 19th century by author H. Rider Haggard in his adventure novel, King Solomon’s Mines, whose publication coincided with a boom in archaeological discoveries of ancient sites in the Middle East and Africa.

The treasure then was gold, silver, and gems. Today the most precious treasures are genes, genomes, and genetics. Genetic research is a scientific discipline that investigates the role of genes in human disease. If we can decipher the precise gene or sequence that is responsible for a particular disease, we can develop more targeted and specific treatments. It is the potential applications of this knowledge that has research groups and big pharma investing a great deal of time, money and effort into identifying the genetic mechanisms underlying disease. With the advent of newer technologies that enable us to introduce targeted changes in genomes to correct defects (gene-editing), genetics has moved from science fiction into reality.

Traditionally, scientists have genetically engineered mice to ‘knock out’ genes in order to evaluate their function. Once they have discovered what the gene does, it is possible to make new drugs that can either block a gene (if it is harmful), or enhance its positive functions (if it is useful). However, while such research is informative, evidence from studies in animal knockouts often does not hold for humans. Genetically engineering humans to study genes is not possible, however natural human ‘knockouts’ exist in different populations around the world.

Consanguineous marriages, which are common in Pakistan, are much more likely than unions between unrelated people to result in human knockouts. With growing interest in genomes in this part of the world and knowledge that such research has caused ethical challenges in other countries, it is important to evaluate the status in Pakistan to identify gaps so that we can ensure safeguards and good practice for future studies.

“Mirror, mirror on the wall…who is the most ethical of us all?” is the title of a study that I conducted three years ago to understand if there were ethical guidelines available for genetic studies and to then analyse and describe the extent to which researchers in Pakistan comply with existing ethical standards. Pakistan’s National Bioethics Committee (NBC) has published several clinical ethics guidelines and listed a review of genetic research studies. However, it has issued no guidelines for genetic research, gene therapy or gene editing studies.

I consulted ‘The International Compilation of Human Research Standards, 2019 edition’ compiled by the Office for Human Research Protections (OHRP), U.S. Department of Health and Human Services, to identify local, regional and international standards for genetic research. Once I had identified the guidelines, I searched for research studies published from January 2017 to December 2018. These studies were assessed for a number of ethical standards: informed consent, conflict of interest, and IRB review. These categories were complemented by author, institution, the disease studied, study type, and NBC review. This analysis of ethical standards included a total of 52 studies. According to the data I collected, over 90% of the research was conducted through international collaborations. 19/52 publications were first author studies by a Pakistani researcher based at a Pakistani institution, but most (39/52) were collaborations with either a UK or US based institution. Funding for 57% of the studies was solely from an international funding agency.

The highest number of publications were related to blindness, deafness, neurological and developmental disorders (24/52), with 45% conducting whole exome sequencing. No gene editing or gene therapy studies were identified. Many of the genome-wide association and consortium studies using biological material or genetic data from Pakistan had not been submitted for IRB review, and no study mentioned a review by the NBC or a material transfer agreement. No genetic counselling was offered to support participants in any of the studies. There was no clear reference to any community engagement activities or awareness sessions. Although informed consent was mentioned in most studies, a blanket statement that “consent was taken” does not indicate the quality or understanding of the process.

International research guidelines presuppose an established system of accountability and oversight. However, Pakistan, like many LMICs, does not have strong internal or national oversight and accountability. There is an overwhelming expectation about the integrity of the researcher and his/her familiarity with ethics. Many of the guidelines tend to focus on individual obligations. Discussions of institutional imperatives, broad social goals or collective responsibility are rarely concrete.

Although no human gene therapy or gene editing studies were identified, gene editing technology is being explored in agricultural research in Pakistan. Applications of this tool will transition to microbial and human genetics and it is vital that we establish systematic changes for compliance, oversight and accountability. The findings from my study provide a foundation of behavioural practices for researchers. It is a starting point to develop systematic changes.