A big black hole – that was what bioethics seemed like to me. You sent in a research protocol for review to an ethics review committee. You waited with bated breath. You did not know when you would get a response or what it would look like. You dared not ask questions of the secretariat or the chairperson. It was all “hush hush.” And their word was final, even if it looked like the questions asked did not seem related to the protocol you had submitted. Like a big black hole, if you dared to stick your hand into it, you might be bitten and would not even know what had bitten you.

My frustration as a medical researcher sent me down a path of trying to understand bioethics. Why was bioethics important and how could systems that were critical to the conduct  of  research  be  responsive  to  the  needs  of researchers in Kenya? After four failed admission attempts for “administrative and other reasons” I finally got into the University of Cape Town’s ‘IRENSA” NIH Fogarty-funded Diploma in Research Ethics. Completion allowed me to “sit at the table” and initiate discussions on improving systems at my institute KEMRI. But that was not adequate to quench my thirst for bioethics training. I needed more.

I started seeking a Master’s level training. Unfortunately, most programs required a one-year full residential stay in the country in which the university was based. No training programs were available in Kenya. The Centre for Biomedical Ethics and Culture was the only institute that offered Master’s level education in a blended format. This was a perfect fit for me as I had significant administrative responsibilities as the Deputy Director at my institute.

I decided to apply, unaware that until then their training had been focused entirely on Pakistan. Fortunately, I passed the stringent preliminary examinations required and was subsequently accepted as the first non-national scholar in the Master’s program. After two years of intensive learning and empirical research, I realized that there still remained a gap in capacity building in Kenya. The CBEC program with its alternate year intake and the limited number of trainee slots for international scholars was not going to be able to water the desert sufficiently to yield adequate harvest from the Kenyan soil.

An idea of a partnership between KEMRI and CBEC took root and was pruned over a couple of attempts to yield fruit as a successful NIH grant award: The CBEC KEMRI Bioethics Training Initiative (CK-BTI). This has resulted in over 700 trainees from a variety of backgrounds trained in various certificate courses designed to improve knowledge of research ethics committee members, researchers, clinicians and other healthcare-related professionals.

Two Kenyan universities are currently approved to offer Master’s in Bioethics and the CK-BTI continues to build capacity by providing pedagogy training for the faculty at the two universities. Through this, we hope that we will continue to water the ever-growing tree of bioethics in Kenya by fueling it with innovations in teaching and education.

Let me begin by offering my sincere and enthusiastic congratulations to all the CBEC faculty, staff, and students on the centre’s 20th anniversary. One of the highlights of my academic career has been the opportunity to visit CBEC in 2023 to participate as a visiting faculty member.

I received my December 2023 copy of Bioethics Links the very week in which I was invited to write a brief word on my experience as a foreign faculty member at CBEC. That issue contains a photo of the graduating class of 2023, the very students who were present during my visit. I’ve enjoyed perusing that photograph and reflecting on the many wonderful exchanges I had with faculty and students during my time there. I’m sure I learned more from those brief encounters than what I was able to impart to all those with whom I had the pleasure of interacting.

There are more wonderful experiences to comment on than what I’m able to do in the space available here, but I will note briefly some of the highlights. I was particularly impressed by the caliber of the students enrolled in the academic programs, many of whom are senior clinicians. It was exciting to be part of a bioethics program that is having immediate and enduring impacts throughout South Asia, North Africa and beyond. Drs. Moazam, Jafarey and others have created a safe and stimulating environment for rigorous intellectual exchanges amongst those from varying cultural and religious traditions.

Aside from the academic experience, the cultural experience was extraordinary. I enjoyed unparalleled hospitality during my short stay, and I particularly enjoyed the communal lunches which provided opportunities to get to know a few individuals on a more personal level. I was treated to a tour of the impressive hospital in which the Centre is housed, as well as a local museum. It was exciting to experience some of the local culture including a wonderful meal at a seaside restaurant. Some of that excitement, I must admit, might be described as ‘anxiety’ as our various drivers navigated the Karachi traffic at what seemed to me to be an exceedingly rapid pace.

The only negative aspect of my visit to CBEC was related to the time it took to journey half way around the globe to get there, and then the challenge of adjusting to the jet lag. If I were to visit again I’d plan to come a few days earlier so that all of the above-noted positive experiences would have been even more enjoyable with a well-rested body and mind. Again, my heartfelt congratulations to everyone at CBEC. I wish a continuing success in your next 20 years and beyond.

The year 2024 marks two decades since the establishment of the Center for Biomedical Ethics and Culture (CBEC) at the SIUT in Karachi, a commendable milestone worth celebrating.

Founded in 2004, the Center is not only one of the oldest and most prestigious institutions working on bioethics in the region, but it has developed an excellent reputation at an international level, with notable contributions in areas such as ethics of organ transplantation, research ethics, global health ethics, and clinical ethics.

It is the only Center in Pakistan and the Eastern Mediterranean Region dedicated to enhancing education and research in bioethics through formal degree programs in bioethics (offered free to make them accessible to everyone), constituting an extraordinary resource for Pakistan, the region, and the whole world. One of CBEC’s distinctive features – as indicated in its title – is its focus on exploring the intersection of culture and ethics, recognizing the significant role of cultural contexts in ethical reasoning.

The collaboration of the Centre with the World Health Organization (WHO) on health ethics reaches all the way back to its inception, as Professor Farhat Moazam, CBEC’s director, served on WHO Expert Groups on ethics of organ, tissue, and cell transplantation in 2003. Since then, CBEC has been intensifying its joint work with WHO, both with Geneva Headquarters as well as the Cairo Regional Office, in various areas. In recognition of its excellence and collaborations with WHO in diverse areas, the Centre was designated a WHO Collaborating Centre for Bioethics in 2017, making it the first one in the entire Eastern Mediterranean Region (EMR).

The Global Network of Collaborating Centres on Bioethics was initiated in 2009 recognizing that many ethical issues are inherently global in nature, and in today’s world require a global understanding and joint response at an international level.

Since joining this Network and the WHO family in 2017, CBEC has been of key importance for WHO’s work in Bioethics. First, for WHO Headquarters at the global level, CBEC  has  been  providing  crucial  contributions  to  the formulation of WHO guidance documents and policy frameworks, in areas such as ethics of emergencies and epidemics, fostering National Ethics Committees, research ethics, and organ and tissue transplantation. In doing so, it has been representing a unique regional perspective and voice and strengthening an intercultural approach to bioethics.

Furthermore, at the regional level, CBEC has been a key institution for fostering collaboration in bioethics, supporting the Research Ethics Committee, and providing a unique hub for educational and regional training initiatives in bioethics within the EMR. More recently, it has also been strengthening collaborations across regions, for example with Africa.

In summary, CBEC’s two-decade journey reflects a strong commitment to advancing bioethics education and research in Pakistan and beyond, with numerous contributions to global bioethical initiatives and partnerships – it is truly a unique Centre.

WHO owes deep gratitude to all the faculty members of CBEC for their expertise and their unremitting support in advancing WHO’s agenda on health ethics, with special thanks to the two co-leads of the WHO Collaborating Center, Professor Farhat Moazam and Professor Aamir Jafarey. It is hoped that in the next 20 years, CBEC will continue to thrive and deepen its collaboration with WHO.

When Dr. Farhat Moazam invited me to visit Karachi in 2004 to speak at the inauguration of CBEC, I was thrilled that I would be visiting a part of the world that I knew only from newsreels and travel photos. I assumed I would be making a few talks, seeing a few sights, and collecting an unusual stamp in my passport to display as I reported my experiences at a destination that would prompt remarks from friends and colleagues.

Next winter I hope to make my 10th visit to Pakistan, with an entirely different set of expectations. On my first trip, I was treated as a special guest alongside visitors whose achievements should have earned them far more deference than I could claim. Since then I have learned that the warmth of hospitality is a hallmark of Pakistani response to all guests. The relationships I have developed with friends and valued colleagues in Pakistan draw me back time after time.

But the trajectory that CBEC has followed is much more important than my impressions as a visitor. It began as a small outpost on the subcontinent that trained a handful of physicians and others in the health science world to think clearly as they confronted the complex bioethical questions raised all around Pakistan. A critical mass of well-informed CBEC graduates has now developed into a cohort of experts who serve in all regions of the country. In two decades, CBEC has become a well-recognized hub for training, consultation and access to expertise on crucial issues.

CBEC has also developed an extraordinary outreach program, including a joint training venture that has sent CBEC faculty to Nairobi, Kenya, and has brought Kenyan students to Karachi to further enrich the mixture of those who matriculate in the bioethics curriculum. The Centre has published a series of educational videos and is regularly represented in academic journals and through presentations nationally and internationally. It would have seemed foolhardy twenty years ago to predict this level of success.

I have had the good fortune to teach each of the current faculty members at CBEC as they received their training in bioethics, and to watch them grow over the years into seasoned teachers themselves whose work is recognized far beyond SIUT and the Karachi community. Over forty years of teaching I have often been reminded of the comment of American historian Henry Adams: “A teacher affects eternity; he can never tell where his influence stops.” I am proud to have been associated with a place where I had a small hand in creating the big splash that CBEC now produces. I am confident in saying that the influence that these efforts generate in many parts of the world will outlive us all.

The Centre of Biomedical Ethics and Culture (CBEC) in SIUT, still the only center in this discipline in Pakistan, will celebrate its 20th anniversary this year. Soon after the Center’s inception, Dr. Manzoor Ahmed, my teacher and the doyen of philosophy in this country, introduced me to Dr. Moazam and since 2006, I have been part of CBEC’s teaching faculty. During the Foundation Module, I introduce basic philosophical concepts, and their deep, historical connection to ethics, to students enrolled in the Center’s Postgraduate Diploma and Master’s in Bioethics programs.

human subject research or are practicing physicians who take care of patients and fight to save their lives. They are therefore individuals responsible for making decisions that can have serious moral and social consequences. Among my challenges is to help students realize the relationship of the biological human body with human metaphysical and social domains, and to grasp that the connection of the sacred/spiritual to the secular/temporal spheres in life, especially in Pakistan, is important in the totality of healing.

Establishing a formal institution of bioethics is presumed by some as a luxury to aspire to in a low middle-income country with a post-colonial society. Perhaps it is considered too daunting a task to critically discuss the moral challenges in a country where resources are severely limited and access for many to healthcare services is far less than optimum. In fact, these very factors make education in bioethics imperative.

The growth of bioethics as a distinct field of knowledge, considered to be the intersection of life sciences with ethical issues, has increased substantively around the world. The term “bioethics” was first used by Van Rensselaer Potter in the 1970s. According to him, it is “biology combined with diverse humanistic knowledge forging a science that sets a system of medical and environmental priorities for acceptable survival.”¹

Potter revisited the notion of survival in a profound manner. His definition of survival did not merely imply biological survival. He believed that the comprehensive survival of human beings as a species cannot be guaranteed through ahuman,  positivistic  and  naturalistic  methodological investigations. The field of bioethics is therefore necessary since a solely objective understanding of human beings risks crossing the normative limits necessary for continuing existence on earth.

Hard sciences like biology, genetics, pharmacy, biochemistry, microbiology that rely on objective scientific facts and positivistic scientific methodologies, require incorporating the human element that is provided by humanities, philosophy and religious studies. The birth of modern medicine and its increasing reliance on biomedical technology and objectivity has excluded this feature from the practice of medicine. The growth of science/technology and unregulated research combined with the human desire to control nature and time requires ethical circumspection and tempering. This makes programs in bioethics education not a luxury, but a necessity in contemporary times.

My aim in the bioethics programs at CBEC has been to enable students not to merely understand philosophical terms and concepts, but to provoke them to move beyond scientific, positivistic ways of thinking and to engage with abstract concepts, and the ways in which these play out in their interactions with patients and families. I consider my contributions to the process of enhancing the conceptual capacities of healthcare professionals, front line soldiers in creating a healthy Pakistan, among my most meaningful roles as a teacher. It has been an honor to work with CBEC and its faculty who have made it their life-long mission to build ethics capacity in the country.

Reference:

[1] For details see, Potter, V R (1971): Bioethics: Bridge to the Future (Princeton, NJ: University of Princeton Press) quoted in Vijay Kumar and Deepak Kumar Bioethics, Medicine and Society: A Provocative Trilogy, op.cit. p 13.

It is ten years since I served as a member of the External Review team for the Centre of Biomedical Ethics and Culture, and I am delighted to write a few words of appreciation for this remarkable bioethics centre as it reaches its 20th anniversary. Before my retirement in 2016, I had the privilege of founding three biomedical centres in New Zealand, England and Singapore, and I also served as President of the International Association of Bioethics (IAB) and as the Chair of two Bioethics World Congresses, in London and in Singapore. On the basis of this experience, I can say unhesitatingly that CBEC stands out as one of the world’s leading centres in the field, this distinction being underlined by its recognition as a WHO Collaborating Centre.

Let me first note the important distinctiveness in its title: ‘Biomedical Ethics and Culture.’ This very explicit reference to cultural influences in bioethics is hugely important, given the dominance of Western cultural values in the academic literature, and it has particular resonance in Pakistan, which was founded as an Islamic state. The direct way in which CBEC has dealt with this is through its excellent series of teaching videos, which engage fully in religious and cultural issues in Pakistan, yet also remain a relevant resource in other cultural and religious settings.

The Centre received high praise from the 2014 External Review team, but their Report also noted that the wide range of CBEC’s commitments – Master’s, Diploma and Certificate courses, plus training and support meetings throughout Pakistan – could not realistically be sustained with its current academic and support staff and its very limited accommodation. These concerns have been addressed and it is heartening to note that there are now four full-time faculty, as well as a range of associated faculty, full-time additional support staff and a full floor in a new building. However, I remain concerned about the continuing pressure on senior staff, especially as the Centre continues to expand – a victim of its own success! While study leave has been authorised by the host institution, this has not yet been fully taken up, which leads to a real risk of burnout. I trust that in the near future all full-time teaching staff will take the opportunity of the academic refreshment that sabbatical leave provides.

Another great achievement of the Centre in its second decade has been an increased international profile. The faculty continues to foster international links through membership of international committees and numerous publications in bioethics and other journals. An impressive new international collaboration results from a Fogarty grant enabling CBEC to partner with the Kenyan Medical Research Institute to set up certificate programs and initiate a Master’s program in Kenya. This outreach is one more testimony to the high status that the Centre has achieved.

In conclusion, I would like to add a personal note. My association with CBEC over many years has greatly enriched my own understanding of bioethics, most especially the challenges we face in an increasingly multicultural (but often very conflict-ridden) world. As the Editorial in the latest Journal of Medical Ethics strongly argues, we isolate bioethics from political and social issues at our peril.1 CBEC has shown me how the social context of bioethics is a core aspect of the discipline. But more than that, now that I am fully retired, I treasure even more the enduring friendships with Farhat Moazam and with Aamir Jafarey I have gained over the years. Collaboration and friendship across professional, generational and national boundaries are sure ways of fostering a bioethics that speaks truth to power and to give hope to the dispossessed.

Reference:

1. Shahvisi A. The ethical is political: Israel’s production of health scarcity in Gaza. Journal of Medical Ethics 2024;50:289-291.

‘Help. Life. Hope. SIUT. Words that make a world of difference. Use your Zakat & Donations to reach out to those who can’t afford to live.’

These are the words on the banner before me as I wait for my flight to board at Quaid-E-Azam International Airport. When I landed in Karachi eight days ago, little did I know that I was embarking on a life changing journey that would allow me to see just how these contributions literally breathe life into the poor ill.

I thought I was going to CBEC SIUT to give a presentation on the ‘corporate physician’ and bio-ethical dilemmas in the global arena, and gather data for a research paper on the interactions between doctors and the pharmaceutical industry in Pakistan. I was actually about to be educated in emerging ethical issues in the biomedical arena from world-class presenters – and learn a lot more about humanity.

The view from the rooftop terrace outside CBEC will haunt me forever. I talk incessantly, but for once I was speechless. Men, women, children, babies in makeshift tents were waking up on the pavements below me. There were so many of them living on the streets, making breakfast in non-existent kitchens; some still sleeping in the littered lanes. I couldn’t quite believe that among them were patients being treated at SIUT, who were possibly waiting for kidney donors or needed dialysis or follow up treatments on a daily basis. The others were with their families, who had travelled from afar to be by their sides. I wondered how it was possible to work for a hospital surrounded by such pain and suffering and witness this heart-breaking existence every day. It all became clear when I was taken on a tour of the hospital and was told everywhere:

‘This isn’t a hospital; this is a phenomenon.’ ‘This is the only hospital in the world where you can be treated with dignity if you are poor.’ ‘Welcome to our hospital.’

It was in the paediatric nephrology department that I was overcome with emotion as a mother of a young child sobbed, and another grasped her son and asked me to check his files with urgency. I was surrounded by sick children and felt completely useless. The only thing I could do was nod and smile. They all smiled back.

Faced with the stark reality that the majority of the patients at SIUT (perhaps more than ninety per cent) are below the poverty line, it’s hard to imagine how any individual or company could do anything to harm them further and it is this sentiment especially that I take back with me to Scotland. My research interests lie in investigating how commercial interests impact on public health policy making – sometimes to the detriment of public health. There is evidence that pharmaceutical regulations put in place to protect the interests of patients may be ineffective and can be circumvented. Ineffectual rules or industry self-regulated codes of conduct may exist to create a veneer of respectability in developed economies, but are virtually non-existent in the developing world where multinationals flock to conduct clinical trials at a fraction of the cost.

In exchange, countries like Pakistan get ‘gifts’ in the form of corporate social responsibility – pharmaceutical companies plant trees in community gardens, which display their logos, instead of subsidising medicine for the poor. These promotional activities are often classed as philanthropy, but it’s only when you witness genuine altruism that you realise what the art of giving – without flashing the label of charity – is all about.

I’m grateful to everyone at SIUT and in particular those affiliated with CBEC for reminding me that there are very good people in this world, and reigniting my passion for research in bioethics. I am now convinced that there can be happiness and hope even for those who can’t afford to live.

In a presentation given at CBEC on 22^nd December 2017 entitled “Big Data: Losing Control of your Digital-Self” [1], I lamented about the ease with which companies have surreptitiously amassed a wealth of knowledge about us. Us as in the individual – you or I, not an aggregate sum. This data is being used in a multitude of ways and even where not malicious its use may cause harm.

Our world is changing. Behind all the apps, all the smart devices, and all modern digital comforts, there is one impetus – collect all the data all the time. The most valuable commodity in the digital world is not a crypto-currency but in fact our data. Even in the physical world data is more valuable than oil [1]. Everything we do leaves a digital footprint. Landing on a webpage creates a trail of evidence of our activities, both on our own devices (in the form of cookies) and on the servers running the website (in terms of access logs). The advertising eco-system that now drives the Web 2.0 and e-Commerce world, in fact exposes our data to hundreds of other entities without us knowing the extent or giving explicit consent.

While we consider this a necessary evil of the digital world, the ubiquity of digital devices means that this phenomenon of data harvesting translates to the physical world as well. As we walk through a public place – or any place – we leave traces of our presence. The signals (WIFI, GPRS, Bluetooth) emitted by our devices are detected and logged. Should you be so inclined, your home router can be converted to spy on the comings and goings of your neighbour¹ or their income level by counting the number of smart devices. Linking these detector systems with CCTV, loyalty cards, other smart devices (bulbs, home assistants, device finders) allows organisations to create rich models of ‘us’.

These rich models are the new commodity of the surveillance capitalism era. A term coined by Shoshana Zuboff in 2015 [2], surveillance capitalism is a new economic order that claims human experience as free raw material for hidden commercial and security practices [3]. The addictive nature and reward schemes of cyber (e.g. Snapchat), and cyber-physical (Pokémon Go) apps has led experts to estimate that we touch our mobile devices anywhere between 80-2000 times a day [4-5]. Through this constant use of our devices, the phone manufacturers and the app designers are able to collect data on us passively. Sensors within the device such as Accelerometer, GPS, App Census and Usage, 3G/4G signal strength, available WIFI Connections and device specific information sensors [6], allow the data collectors to infer¹ our age, gender, income, level of education, sexual identity, activity and preferences, political leanings, eating habits, friendship groups, and health [7]. The common retort to learning of the nature and scale of the data acquisition is, “What’s the harm? So, what if they personalise my ads?” However, the full context, circumstance and extent of the data use are not fully understood.

Understanding the problem from a Nicomachean lens [8] we can question the problem using the 5 W’s. Why is our data being collected? Possibly, this is the easiest of the five questions to answer. Our data is being collected to feed a process known as data-driven development. Computer scientists, engineers and domain experts the world over are building wonderful futuristic things, such as medical diagnostic tools, transport and logistics solutions, new business models, tools and services, and revolutionary urban infrastructure planning, to name a few. These developments have led to new commercial opportunities and a whole sector of pay-as-you-use services. This ‘servitisation’ first seen in the computer infrastructure world through cloud computing has spread to vehicle ownership (through ride share apps), books, films and music (through streaming services), to tourism (through accommodation sharing apps). The provision of these services and the entire business models is both reliant on our data and generates further data about the human experience.

What data is collected and what is it used for? While the first half of this question was answered in the preceding paragraphs, finding a complete answer to the latter half is problematic. At face value our data is used by those we give it to, to provide us a service, and to determine new products, services, or marketing opportunities. While a benign sounding outcome, new products, services, or marketing opportunities can span the design of a new screw-driver [9], all the way to a targeted campaign to influence elections [10]. Further, as we see in the next questions, when and where the data enters the security apparatus is completely obfuscated from us – the data subjects.

When was the data collected and when will it be used? Rightly or wrongly, many a famous personality find themselves in trouble for comments made 10-15 years ago because in some archive there is an errant tweet or post. While we may believe we have deleted a mis-informed tweet as soon as humanly possible, there are data aggregators that are automatically farming our activities in real-time. It is not just large organisations, anyone with a Twitter account can collect and store Twitter activity using the public interfaces.  Posts and tweets are not necessarily deleted from these archives. This information (known as a firehose) is then sold on to anyone with a credit card. It is foreseeable that an alternate Equifax-LinkedIn hybrid emerges the allows employers to get a moral, ethical or expected performance score of existing or potential employees that is based on their historical data footprint. The young adults (Gen-Z) of today (ages 20 and below) have lived their entire lives under the auspices of surveillance capitalism. The full impact of the data their parents and they themselves have shared about themselves is yet to be seen.

Where is our data being kept? This is where things become murkier. Our data has been collected over the last two-decades through different online and physical services by organisations who have changed names and owners hundred times over.  Technology evolves every 18 months and companies are constantly cycling deprecated (in the process of being replaced by new technology) equipment. So, what happened to the hard drive holding our biodata when we registered with a website, hotel, or conference in 2009? Is the hard drive still floating between offices? Was it dumped in the trash when the computer stopped working? Did someone else recover that information? Was the data sold on? Is the data still with the organisation? Do they keep it in the cloud? Is it secure? Before Hotmail/Outlook and Gmail cornered the email market, think of all the email accounts we had created in the nineties and noughties. Did we delete all the emails, pictures and information from our Supernet or Cybernet accounts? Did it disappear from their backups? Did we delete all our information and pictures from early social media e.g. Orkut and MySpace?

Who has our data? The final question for which no one can realistically give a complete answer. As is already clear from the other four-W’s, we don’t know the full extent of Why our data was collected, what all was collected (beyond what we put in a web-form) and what it will be used for, how far back does the data collection go, or what the data is now. The European Union’s Regulation on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (also known as General Data Protection Regulation: GDPR) tried to make a first stab at solving the Who problem [11]. On the 25^th of May, 2018 when the regulation went into effect we got a brief glimpse into the scale as many responsible organisations informed the data-subjects that their data was being held and what it was being used for [12]. However, the data subject either blindly clicked accept to the new terms and conditions or completely ignored the emails [13].

General attitudes in Pakistan tend to either be that Pakistan and Pakistani society is technologically so far behind Silicon Valley that the implications of these technologies are inconsequential, or that it does not matter if the pictures posted on Facebook or Instagram are processed by some algorithm. But the pervasiveness of digital technologies should not be underestimated. A look at Google’s Play Store [14] and Apple’s App store [15] usage shows that the vast majority of applications downloaded and used by Pakistani’s are made and designed by non-Pakistani entities. We are inadvertently surrendering our digital identities to foreign companies. The models they generate to represent us may have inherent biases that are can be seen affecting people of colour in the West [19-22]. The new tools and services built on these models will inevitable find their way into the Pakistan (banking KYC and loan assessment software, student performance evaluation software, etc.)

We may never know the full extent of who has our data or whether it will come back to bite us in an Orwellian, or Huxley-ian, or Gasset-ian dystopia. The general consensus is that it will be a dystopia.

[1]A demonstration of these techniques and their effectiveness were covered in a seminar by the author, a recording of which can be found on the CBEC Facebook pages.

References:

1. https://www.economist.com/leaders/2017/05/06/the-worlds-most-valuable-resource-is-no-longer-oil-but-data
2. Zuboff, S. (2015). Big other: surveillance capitalism and the prospects of an information civilization. Journal of Information Technology, 30(1), 75-89.
3. Zuboff, S. (2019). The age of surveillance capitalism: the fight for the future at the new frontier of power. Profile Books.
4. http://time.com/4147614/smartphone-usage-us-2015/
5. https://blog.dscout.com/mobile-touches
6. http://www.surveyswipe.com/passive-data-collection.html
7. https://theglassroom.org/glassroomlondon/exhibits
8. Sloan, M.C. (2010). “Aristotle’s Nicomachean Ethics as the Original Locus for the Septem Circumstantiae”. Classical Philology. 105: 236–251. doi:10.1086/656196
9. Chandra A. and Chandna, P. (2011) “Ergonomic design of hand tool (screwdriver) for Indian worker using comfort predictors: a case study” International Journal of Advanced Engineering Technology, vol. 2, no. 4, pp. 231-238
10. Cadwalladr, C., & Graham-Harrison, E. (2018). The Cambridge analytica files. The Guardian, 21, 6-7.
11. http://support.gnip.com/apis/firehose/overview.html
12. https://dev.twitter.com/
13. https://eugdpr.org/
14. https://www.bloomberg.com/news/articles/2018-05-25/blocking-500-million-users-is-easier-than-complying-with-gdpr
15. https://thenextweb.com/eu/2018/12/27/gdprs-impact-was-too-soft-in-2018-but-next-year-will-be-different/
16. http://xyologic.com/
17. http://appannie.com/
18. https://atlantablackstar.com/2016/01/31/study-racial-discrimination-in-mortgage-lending-continues-to-impact-african-americans-with-a-black-name-lowering-ones-credit-score-by-71-points/
19. https://www.theguardian.com/inequality/2017/aug/08/rise-of-the-racist-robots-how-ai-is-learning-all-our-worst-impulses
20. https://www.forbes.com/sites/bernardmarr/2019/01/29/3-steps-to-tackle-the-problem-of-bias-in-artificial-intelligence/#51fc08297a12
21. https://www.mortgagebrokernews.ca/news/technology/ai-needs-a-lot-more-work-before-it-can-be-safely-used-in-mortgage-253820.aspx
22. Morstatter, F., Pfeffer, J., & Liu, H. (2014, April). When is it biased?: assessing the representativeness of twitter’s streaming API. In Proceedings of the 23rd international conference on world wide web (pp. 555-556). ACM.

In 2005, a married couple of Pakistani origin living abroad decided to enter into a surrogacy arrangement with a Pakistani woman. The husband, Farooq, came to Pakistan, presumably entered into a nikah (marriage) with a lady called Farzana, and through an IVF process started a chain of events which would lead to the first court-decided case of surrogacy in Pakistan.

As soon as the baby was born, Farzana left the child with Farooq. However, a few days later, she decided to recover the child and filed a case against Farooq under the Code of Criminal Procedure (CrPC) section 491 (recovery of detainee) and the court awarded her custody.  Farooq then moved the local Bench of the High Court where he stated that he had a contract of surrogacy; he also relied on the Guardian and Wards Act, 1890 and petitioned the court to be awarded guardianship under section 25. In raising this petition, he stated that he was wealthier than Farzana, being a practicing doctor. However, the court was not satisfied that wealth alone could be a ground of custody and since Farooq had not admitted to a marriage with Farzana, it decided that there was no link between Farooq and the child. Therefore, on merits, the court allowed the child to stay in the custody of Farzana and also noted that surrogacy had no legal status in Pakistan.

Farooq appealed against this decision but in its Appeal Judgment (in November 2012), the High Court of Lahore upheld the two previous orders. In its reasoning the court stated that children belonged to “the bed” or conjugal relationship, and their custody rested with parents who admitted to having a marital contract with each other. Since Farooq denied that he was wedded to Farzana, he could not claim any rights over the child. However, as Farzana was undeniably the mother, she was the child’s rightful guardian. Further, the Court once again underlined the null and void status of a surrogacy contract as the law of the land did not recognize surrogacy. This ended a seven year legal battle on the custody of the child. (P L D 2013 Lahore 254)

What this case has served to illustrate is that a contract, whereby a woman (whether as a biological donor or as purely a gestational parent) carries a child for another couple, would neither be recognized as legal nor be enforceable in Pakistan. In fact, Pakistan like many other countries does not have a legislative framework that regulates surrogacy. Consequently, a surrogacy arrangement would be ignored and the court would rely on the Guardian and Wards Act, 1890 to award custody to a fit parent.

The question that then arises is whether there is a possibility of creating a framework of laws related to surrogacy in Pakistan. In order to fully answer that question (in line with the constitutional principles requiring that no law may contravene the Quran and Sunnah) we would have to determine the position held on surrogacy by the majority of Islamic jurists which is beyond the scope of this paper. However, what we can try and understand are the challenges that lawmakers may face should they try to develop such a framework.

The first challenge would be to determine who would be deemed the mother in a Court of Law. The question of fatherhood is not at stake as issues of surrogacy tend to revolve around the rights of the gestational/birth mother versus that of the couple in the arrangement. In the Quran it is stated in Surah al-Mujadalah (58:2) “….their mothers are only those who conceived them and gave birth to them.” This clarifies that the mother will be deemed the woman who has given birth. Therefore, in cases where there are no questions of DNA, the surrogate mother would be the mother who physically carried and gave birth to the baby. However, in the case where the birth mother is separate from the donor egg mother and we do involve considerations of DNA, the above ayat (verse) does not provide a clear answer. It clearly stipulates that a mother is one that has both (a) conceived and (b) given birth. It does not address the situation of the conceiving mother being separate from the mother who gave birth.  If the two are separate then either of them may be deemed a mother, a situation that may open a Pandora’s Box of complexities: If either of them can be a mother, then can neither of them claim the right to motherhood?

The second challenge is that of the provisions of the Hudood Ordinance impacting the legitimacy of the arrangement. Surrogacy essentially involves questions that relate to the legitimacy of procreation outside a marriage contract. In absence of a marriage contract between a donor father and surrogate mother, the provision of Pakistan Penal Code dealing with zina (adultery) may also come in to play. In the case of Farooq vs Farzana, the honorable Judge stated that the child belongs to “the bed” and absent a lawful marriage, a question of adultery could have been brought into this equation. Given the legal history of Pakistan, it would be challenging to establish the absence of coitus if someone outside the arrangement did in fact make an accusation. On the other hand, if a marriage contract does exist then the very concept of a surrogacy contract becomes irrelevant. The laws on marriage, its dissolution and the guardianship laws adequately provide for the custody of minors coming from a marriage.

The third, and I believe, the most significant challenge, is one that deals with the legitimacy of a surrogacy contract itself  that is, a contract which would allow a woman to rent out her uterus. If a legislative framework is created that regulates a surrogacy relationship, can it be enforceable, and under what terms?

Surrogacy contracts, in countries where they are recognized, are often divided between commercial and altruistic. In Pakistan, the idea of a surrogacy contract on a commercial basis may be considered illegal because it would mean that the subject of the contract is a uterus. It may open up questions about the right of a person to rent out parts of their body and it may lead to exploitation, specifically in a country like Pakistan where there is a large economic divide and a history of bonded labor. Further, it would require a deeper analysis of an individual’s right to rent out a body. Is it like providing manual labor? Or could it be equated to a form of prostitution?

Altruistic surrogacy, however, has a different basis from commercial surrogacy and one may imagine a situation where it may be considered legal in Pakistan. However, Pakistani courts do not always have the ability to gauge the true intentions of parties and it would be difficult to establish that a surrogacy contract was indeed altruistic unless a relative has been a surrogate parent. We may draw an analogy to the Human Organ and Transplant Donation Ordinance of 2007 which prohibited all forms of commercial donation and only allows filial proximity for live donors.

Even in UK, where surrogacy is regulated, a surrogacy contract is unenforceable. This means that it is legal but should the surrogate mother decide to violate the contract, the other party would not be able to enforce it. In Pakistan, taking all the discussed factors into account, it seems that we will not be developing surrogacy laws anytime soon and any arrangement of this nature would have to be essentially a private one which would be legally unenforceable and would depend on the trust all parties have on each other. Further, it would need the added protection of legalizing instruments, such as a lawful marriage, which could create its own complications.

References:
http://en.wikipedia.org/wiki/Surrogacy
http://www.ilmgate.org/the-islamic-ruling-on-surrogate-motherhood/

“It takes the whole of life to learn how to live, and – what will perhaps make you wonder more – it takes the whole of life to learn how to die.”

– Seneca, 65 CE

The quest to defy death is as old as humanity itself, perhaps older. In the Abrahamic scriptures, including the Quran, the first human, Adam, is deceived by Iblis (Satan) into eating the forbidden fruit of paradise to acquire immortality (Quran 20:120). The avoidance of death and the quest to prolong life is a pattern repeatedly woven into the tapestry of human stories. In a Greek myth,^[1] Eos, the goddess of dawn, asks Zeus to grant her lover Tithonus (the prince of Troy) immortality but forgets to mention eternal youth along with it. A tragic end follows when Tithonus reaches a “hateful old age,” getting to a point where he is not able to even lift his limbs. Finally, Eos locks him into a chamber where he babbles endlessly. In another Greek myth, the Cumaean Sibyl (a Greek priestess) asks the god Apollo for a thousand-year life, but forgets to mention enduring youth. In the end, she too becomes the “prey of a long old age” and shrinks until she is confined to a jar, whispering, “I wish to die.”

The Roman Stoic philosopher Seneca remarked that it is not only difficult to learn how to live but that “it takes the whole of life to learn how to die.” A few thousand years down the road, humans have not yet succeeded in evading death but medical advancements in the last century are pushing back the boundaries, raising new questions about what kind of life is worth living and what it means to die well. In one of Plato’s dialogues (The Republic, Book III), Socrates says that Herodicus, regarded as the tutor of the Greek physician Hippocrates, tormented himself as well as others “by the invention of lingering death.” Herodicus, who had a chronic disease, spent his life trying to cure himself. Since recovering from that disease was impossible, he used his skills in medicine and therapy to keep himself going till he reached old age. Plato criticizes Herodicus for practicing such coddling medicine and argues that Aesculapius (the god of medicine) did not teach such medical practices – not out of ignorance but because Aesculapius was concerned about society’s functionality. In a well-governed society, according to Plato, there is a function specific to each member of that society, and no one has “leisure to be sick” and doctor himself all his days.

Whether we agree with Plato’s rather stern viewpoint about a useful life or not, it is hard to deny that medical advancements that are making it possible to live longer, are changing the ways in which we die. In traditional narratives of death in many societies, an old parent would die in his bed after having distributed inheritance and attended to his responsibilities. Death in a familiar environment, surrounded by loved ones, fulfilled the dying person’s psychological and emotional needs without involving many healthcare professionals. Death was deemed imminent and faced with patience and confidence. This was a constant in history across cultures. Prophet Muhammad’s companion Bilal bin Rabah on his death bed, sang, “Tomorrow we shall meet with our beloved ones, Muhammad (peace be upon him) and his companions.” The Sufi ascetics embraced death gladly, viewing it as a means of union with God. Ibn Qayyim al-Jawziyya explained that death was a way of union with God, saying, “Every lover yearns for the meeting with his beloved.”^[2]

In fifteenth century Europe, Christian texts titled Ars moriendi (the art of dying) were well known. These texts provided guidance on the proper rules and procedures for facing death in the best way. For those who gladly accepted it, death was not only a natural process but also had a spiritual and ‘other-worldly’ aspect. Dreams and the presentiment of death were common, even among ordinary people. French historian, Philippe Ariès, quotes from the history of Europe, the last words of kings, knights, saints, common people – even children – calmly facing death. “I shall not live two days,” “I see, and I know that my end has come,” “I feel that death is near,” “My death is at hand, that’s what it is,” were common phrases near death.

Despite the fact that people in earlier times prepared themselves for dying well, death did not ask before coming – nor could it be turned away. With the rapid scientific advancement in the last century, death has become less adventitious, at least, in technologically advanced societies where a large cohort of the population dies after going through the regular phases of life (education, marriage, career, and children) and reaching old age. Death no longer seems as unpredictable as before, but something has been lost: The presentiment of death has become rarer.

According to a well-known quote by Ivan Illich, “In every society, the dominant image of death determines the prevalent concept of health.” Death in our times has been medicalized. From an inevitable natural phenomenon or a call by God, death has transformed into the effect of an identifiable cause (disease) which it is possible to get the better of. The categorization of death into natural and unnatural/abnormal/accidental supplements this perception. Along with this, the idea of ‘savior’, formerly invested in the physician’s persona, has now materialized in the form of the healthcare institution and we turn to the hospital to save us from death. The resultant medicalization of society elevates the ‘power over death’ perception to a new level. Death feels optional. Consequently, people spend massive amounts of money on healthcare in the last few days of life. While this does not eliminate death it does create the most rational and normal form of death – a hospitalized death under the supervision of medical experts.

Some contemporary writers, especially from the medical fraternity, have also started focusing on this topic. Atul Gawande, in his essay, ‘Letting Go’, writes that anxiety about death is increasing in modern society. According to Gawande, until the actual declaration of death, there is often a state of denial regarding impending death by both the patient and the family. Possibly, the denial stems from this relatively new, institutionalized image of death as something that can be controlled, circumvented, defeated – or even chosen. As a result, the modern, hospitalized death often follows extraordinary efforts to ‘do everything’ to prolong life – regardless of the quality of that life. For those who are engaged in healthcare provision, a BMJ editorial asks a thought provoking question: “Would you like to die the way your patients do, doctor?”^[3] As Seneca wrote, the question of how to die is perhaps connected to the question of how to live –  the other side of the same coin.

[1] Homeric Hymn to Aphrodite

[2] Ibn Qayyim Al Jawziyya, Madarij Al Salikeen (Ranks of the Divine Seekers: A Parallel English-Arabic Text) Trans. Ovamir Anjum (Brill, 2020), Vol 2, 620.

[3] Enkin, Murray, Alejandro R. Jadad, and Richard Smith. “Death can be our friend” (2011). BMJ; 343.