Monthly Archives: January 2024

PGD Class of 2023

PGD Class of 2023 on the stairs of Dr. Moazam's residence after the annual dinner at her home.

PGD Class of 2023 reflect on their challenges

Oh My Blog!
Beenish Syed

As a PGD student, my life became a roller coaster ride of never ending assignments, readings, and end of module tests.  But posting on the monthly “Blog” was my most daunting task. Before acquiring an “ethical lens” I was unable to see the ethical issues embedded in my daily routine as a doctor. So I decided to write about these on the Blog. To my delight, my postings generated lively discussions among my colleagues and the faculty.

Challenging My Own Beliefs
Atif Mahmood

When I first started my PGD journey, the hardest thing to do was to tackle morally dubious subjects. Having to navigate through difficult moral conundrums made me more aware of subtleties that exist outside textbooks and made me question my beliefs. However, this discomfort helped me grow, giving me a better knowledge of other people’s viewpoints and forming my own moral compass.

From Reels to Ethics
Saima Saleem

After years of working as a filmmaker and media person, embarking on my PGD journey in CBEC felt like a genre shift. Initially, I felt lost amongst the medical jargon but for me the most challenging part was to unlearn my own biases. In stark contrast to the hero-doctor image depicted in media, I realized the ethical tightrope medical professionals walk daily.

The Prejudice of Certainties
Arsalan Khan

Enrolling in PGD bioethics, entrenched in scientific facts and anchored in religion, I stumbled into the grays of uncertainties. The once clear “facts” blurred, exposing unexamined biases. Graduating from the one year program, I now recognize the paramount challenge: understanding other points of view, untainted by the distorting hues of personal opinion.

Palestine

Credit: UN Photo/Shareef Sarhan https://www.flickr.com/photos/un_photo/6029204185

Palestine: Bearing Witness

Refaat Alareer was born in Gaza City in September 1979 during the Israeli occupation of the Gaza Strip. He was killed on December 6, 2023 by an airstrike in northern Gaza during the present invasion underway of the Gaza Strip by the Israeli army.

Alareer was a poet and an activist, and professor of world literature and creative writing at the Islamic University of Gaza. He considered the power of storytelling as an important form of resistance and co-founded the organization “We are not Numbers,” a mentorship program for Palestinian writers. He was editor of Gaza Writes Back: Stories from Young Writers in Gaza, Palestine (2013), and Gaza Unsilenced (2015).

While sheltering in a UNRWA school, Alareer had received multiple death threats stating that the Israeli army knew his location. He sought refuge in his sister’s apartment which was subsequently bombed killing him together with his brother and nephew, and his sister and her three children.

Alareer wrote his poem “If I Must Die,” a few days before he was killed and it has been widely circulated and translated into over 40 languages since then. It was inspired by Black poet Claude McKay’s 1919 poem “If We Must Die,” a passionate denunciation of racism and all forms of oppression, and a call for resistance against such practices.

If I Must Die
Refaat Alareer (November 1, 2023)

If I must die,
you must live
to tell my story
to sell my things
to buy a piece of cloth
and some strings,
(make it white with a long tail)
so that a child, somewhere in Gaza
while looking heaven in the eye
awaiting his dad who left in a blaze —
and bid no one farewell
not even to his flesh
not even to himself —
sees the kite, my kite you made, flying up above,
and thinks for a moment an angel is there
bringing back love.
If I must die
let it bring hope,
Let it be a story

In 2011, more than 12000 Palestinian children flew kites on the beach of the Northern Gaza Strip during a summer camp organized by the United Nations Relief and Works Agency (UNRWA). They achieved the Guinness World Record for the largest number of airborne kites at a given time. During the event, the children also carried the portraits of 66 Palestinian children who had been killed in the Palestinian enclave by Israeli airstrikes during a previous conflict.

Credit: UN Photo/Shareef Sarhan https://www.flickr.com/photos/un_photo/6029204185

Ada Jafarey

The ECH audience give Dr. Aamir Jafarey a standing ovation following his talk that centered on his journey of translating his mother, Ada Jafarey’s autobiography. Personal accounts of his mother along with recital of her poetry added an emotive element to his talk.

Ada Jafarey: Through the prism of her autobiography

The Ethics and Culture Hour (ECH) is an event that CBEC hosts for a wider audience at periodic intervals. Revived after a hiatus of two COVID inflicted years, the focus of this particular ECH was to look at the life and work of the Pakistani poet, Ada Jafarey, regarded as the First Lady of Urdu Poetry through the prism of her autobiography “Jo rahi so bekhabari rahi.“

The catalyst for the event was the recently released translation of the autobiography from Urdu to English, titled “A World of Her Own” by her son and CBEC faculty, Dr. Aamir Jafarey with his daughter Asra. As the translated work states, “this autobiography is the tale of an ordinary girl, and a woman from a traditional household … The girl was a captive of the loneliness that filled her heart, became the woman, who despite being confined to four walls wandered the expanse of her imagination freely.”

For Aamir, the initial motivation to embark on this challenging project was to make his 8-year-old daughter comprehend her grandmother’s story. As years went by, Asra joined as a formal collaborator in the translation while she pursued her graduate degree in English literature. During the event, Asra theorized the limitations of translated works, capturing her dissatisfaction with the product by stating “Almost there, but not quite.”

Nida Wahid Bashir, CBEC part time faculty, who had played a key role in the planning of the event, also served as the moderator for the evening. Dr. Moazam welcomed the guests and spoke about the centre. She also introduced Aamir Jafarey and invited him to talk about the translation. The two guest speakers were prominent poets of Pakistan, Mohtarma Zehra Nigah and Professor Pirzada Qasim, who spoke about Ada and her poetry. The evening ended with a ghazal performance by renowned singer Salman Alvi. Bushra Shirazi closed the session by giving a vote of thanks to all the people who were involved in making the ECH a success.

Women Surgeons

Dr. Moazam gives the State of the Art Lecture, “Evening the Odds for Female Surgeons: Hunooz Dilli Dur Ast,” at the annual meeting of PAUS 2023, Karachi.

Women Surgeons: Hunooz Dilli Dur Ast

Farhat Moazam*

In October 2023, the Pakistan Association of Urological Surgeons (PAUS) invited me to give a State of the Art Lecture in their international conference held in Karachi. As a female surgeon, I chose to speak about the continuing challenges for women wishing to train in and practice surgery subtitling my talk Hunooz Dilli Dur Ast (Delhi is still far away). This famous phrase, traced to 14th century Sufi Nizamuddin Auliya remains, I believe, an apt metaphor for women wishing to pursue surgical careers.

During the 1970s and 1980s while training in general and pediatric surgery in the USA, I was the sole female trainee in surgical programs, and subsequently the only female surgeon for a decade I spent as faculty in an American university. I was constantly reminded how tough it was to become a surgeon, that “even men do not make it through training,” that surgery “requires a man’s temperament, women are too soft, emotional,” and given backhanded compliments that I “worked like a man.”

One could argue that matters have changed since then for women wishing to become surgeons. However, studies published within the last five years indicate that for many women Dilli dur ast remains the reality. The global increase in females graduating from medical colleges over the last three decades (now 50% to 65% of graduating classes) does not reflect a proportionate increase in women trainees/consultants in surgical specialties (excluding gynecology).

Due to lack of indigenous research, this information is unavailable from Pakistan but I suspect the numbers may not be too dissimilar. I conducted an informal, pre-talk survey of the three top healthcare institutions, all with sought after surgical training programs, that had organized the PAUS conference. Between them, they had well over 200 surgeons on staff of which roughly, 20 were women. Majority of female surgeons held junior positions and merely two women had made it to full professor.

A comprehensive scoping review about the experiences of female surgeons from 26 countries (Human Resources for Health, 2020) reveals several factors that continue to serve as hurdles for women. Among the most pernicious is the persistence of stereotypical gender roles, the old canard that “biology is destiny.” Notions that women are less courageous than men, emotional, less rational, are voiced as jokes and jibes directed against female trainees and surgeons. Such perceptions often translate into gender based discrimination against women in surgery with less opportunities in the Operating Room (OR), and emotional and physical harassment by male surgeons.

The scoping study specifically identifies lack of mentorship as an important global impediment reported by women trainees and younger surgeons. Sociological studies indicate that having female surgeons on the faculty can encourage young women to consider surgical careers. This pattern of a dearth of mentorship for women trainees, also surfaces during my conversations with younger female surgeons in Pakistan. Curiously, I also hear from some criticism of women who do “make it in surgery” yet remain unsympathetic to experiences of younger colleagues.

As a woman mentored by male surgeons, I believe it is important that we work towards not perceiving surgery as a war between the sexes. Experienced surgeons, female and male alike, can be effective mentors, tough but fair irrespective of the sex of trainees and younger colleagues.

The Spanish poet Antonio Machado writes, “Traveler, there is no path; the path is made by walking.” Female and male surgeons in Pakistan, and globally, have to walk together to make this path.

*Professor and Chairperson, Centre of Biomedical Ethics and Culture, SIUT

Spaces for Women

A young woman in Karachi rides a motorbike to her university challenging norms of access to public spaces for women in the city. The picture is by Mariam Usman and is being used with her permission.

Spaces for Women: Shattering Utopias

Marium Asif*

When I think of spaces in Karachi, places where I can go alone or with my female friends, I think of being enclosed within four walls. Spaces and places are the same here. They consist of the same four walls, with the limited activity Karachi offers. The only aspect that changes is their interior design. Because spaces for women in Karachi are confined to four walls, a sample book on aesthetics, yet claustrophobic.

The term ‘walkable cities’ is the utopia I envisioned growing up, but it’s a bit of a buzz-word now. It’s an easy win in any argument when a relative asks me why I want to go abroad, what’s so special about Chicago. “Why don’t you stay in Karachi with your family?” ask my relative aunties. “Walkable cities, Aunty.” I reply with a smile, nod and walk away knowing there’s no response they could possibly give to this.

***

In Phadke’s book “Why Loiter” (2011), she talks about how it’s not only unfriendly people that make a place unsafe, but also unfriendly spaces. Design choices that make public spaces obscure and private feed into the notion that the public street is dangerous, and solidifies the gendered distinction that public spaces are to be occupied by men, and the ghar (house) is the only safe spot for women.

While conducting a research study conducted with a colleague in 2020 that involved online surveys with hundreds of women, a rough list of factors affecting the safety of a place for women emerged. The prominent ones included lighting, openness, visibility, security, walk-path, public transport and gender disparity. All these factors are essential when designing a space; after all, who doesn’t think of them when designing a space for public use? However, these metrics are rarely applied within the context of public spaces in Pakistan.

The crux is that the elimination of female comfort when designing public spaces is not taken into account reflecting a deliberate disregard in order to maintain a patriarchal equilibrium, to keep women out of public spaces not meant to be theirs.

***

I’ve spent the last five months walking on the streets of

Chicago. The Institute I attend is in the middle of the metropolitan overlooking Millennium Park and the Art Institute of Chicago. My lovely, small apartment that I share with my friend is almost a 40 minute commute from there. Twenty minutes of that commute is a walk, and the rest is by the train.

The idea of walkability is so novel to everyone I know in Karachi that my stories of the Chicago Transport System will be met with awe. No one in Chicago bats an eyelid when I say that in my circle of fifteen in the city, nobody owns a car despite being in their mid-twenties. This is so because for Chicagoans, cars are not a necessity since for the most part the city is walkable, filled with at least 11 different train tracks and thousands of buses. You can get from the suburbs to downtown without needing a car. You can walk to the grocery store without fearing for your life. You can cross the road and have cars stop for you without fearing someone driving over you. All of which is utopian for someone from Karachi.

***

I am back in Karachi for my winter break. Somehow after spending a few months in Chicago, my automatic response of walkable cities to aunties does not roll off my tongue so easily now. It’s because I realize that I would not be caught dead using the underground subway after 10pm in Chicago, I recheck the train schedule five times before I descend down into the station, and I use the ten-minute walk between stations to call someone because the streetlights are still too dim to feel safe. The metrics of safety for women are not perfect in Chicago either. There is a stark difference in security and lighting once you leave the Downtown Loop and enter the rest of the city. I am realizing that my bar for freedom of mobility for women has been so low that Chicago seemed a utopia to me, but only because it does provide a bare minimum for women which Karachi fails to do.

Here in Karachi, I drive my beat-up white Mira to pick up my friends Ariba and Mariyam because driving them around is safer than calling an Uber. We cruise the city in the hours between noon and maghrib (sunset), we dodge calls from our mothers when we cross the timestamp of 5 p.m., we hop from one cafe to another, and we end up at V.M Sanctuary, an indoor space to work.

We raise our cups of mediocre chai (tea), and we laugh about how we are the awara (wayward) girls in our families. The so-called progressives who have traded the four walls of our homes for the four walls of these cafes.

*Student, Masters of Fine Arts in Writing, School of the Art Institute of Chicago

Honor Killings and Pakistan

Dr. Summaiya Syed Tariq, Police Surgeon

Honor Killings and Pakistan: Continuing Challenges

Summaiya Syed-Tariq*

A young couple had eloped. Belonging to different tribes, but living in the same mohallah (neighborhood) they had committed the most dishonorable act. It was decided by the panchayat (council of elders consisting of men) to lure them back with promise of marriage celebrations. Dressed in their finest, both were killed by their respective families and buried in unmarked graves without funeral rites to reclaim lost family honor.

The above scenario is one instance of “femicide,” murder of women, which illustrates deep-rooted patriarchal values embedded within society. Honor killing, intimate partner violence, domestic or sexual violence, all pose a threat to women’s safety in Pakistan.

The practice of honor killing, colloquially referred to as Karo-Kari and Siyah-kari target both men and women although in majority of the cases, women are its victims. The parallel quasi-judicial systems, Jirga or Panchayats, issue verdicts declaring more women than men guilty and punishable. Different factors account for someone to be labeled as “kari” (black). Marrying outside the tribe, wanting to marry outside the family, being seen talking to a male at a public place is sometimes enough to be killed. The perpetrators of this crime are often members of the immediate family who carry out orders to murder for the sake of “ghairat” [traditional concepts of familial shame].

Human Rights activists estimate that around 1000 women are murdered annually in Pakistan in honor killings.1 As per unofficial statistics from southern parts of Sindh province, at least 217 people including 152 women were murdered in honor-related crimes in 2022.2 Sources in Sindh Police Department confirm that 141 women have been reported as murdered in honor-killings this year.

An alarming aspect of honor killing is that it is often made to simulate suicide. Such cases pose a special challenge and require a high index of suspicion during autopsy and investigations, to accurately declare the cause of death, especially where non-violent approaches are used including poisoning and hanging.

The legal standing of honor killing in Pakistan has a long history with unsuccessful attempts to control it. In 2004, the Criminal Law Amendments in sections of the Pakistan Penal Code (PPC) and Criminal Procedure Code officially recognized honor killings as a form of murder thereby paving the way for it to be prosecuted in regular courts of law.

However, murder under the existing Qisas & Diyat Act 1991, is considered a compoundable offence. This allows the complainants to pardon the accused through a compromise arrived at voluntarily. They can also either claim or refuse diyat (compensation or blood money payable to the legal heirs of the murdered). This creates challenges in the application of the 2004 PPC amendment.

In 2016, Qandeel Baloch, a social media celebrity, was killed by her brother for bringing “shame” upon her family. The accused was subsequently pardoned by his and (the victim’s) parents. This created an uproar both nationally and internationally. Books and movies focusing on Qandeel’s life were developed to bring attention to this cause. All this served as a catalyst for the introduction of the Honor Killings Act 2016.

The Act defined honor killing as “murder” with penal punishments, categorizing it as “fasad-fil-arz” (producing chaos in society). This term, drawn directly from Muslim jurisprudence serves to see the act as a danger to the wider community shifting the nature of the crime to one committed against the State and not only an individual. This concept is also used to decide the severity of punishment awarded by assessing the past convictions of the accused, the nature of the offence and the accused being a danger to the wider community.

The Act however has several loopholes. As an example, determining the “past conduct” of the accused in awarding punishment can serve as a double-edged sword. If the accused has no past history of violence, the degree of punishment can be reduced.

Moreover, since the prosecution must establish that the murder indeed qualifies as honor killing, the credibility and expertise of the prosecutors are crucial factors in the implementation of the existing laws. Lack of training, incompetence and callous attitude of prosecutors can contribute to miscarriage of justice. External and internal influences can also tilt the scale in favor of the powerful.

More importantly, the existence of two sets of law continues to complicate delivery of justice in most cases. Despite the existence of 2016 Act, the Qisas and Diyat Act 1991 still stands leaving the door open for negotiations and compromise, even if the case goes to trial. However to date, no published evidence exists with respect to the percentage of cases that end in a compromise.

While the long-term effects of the laws have yet to be established, increasing social awareness and civil outcry about violence against women in the wider Pakistani society continues to provide impetus for changes within the legal systems. As an example, the Domestic Violence Bill passed in 2021 can be considered a landmark achievement for including emotional and psychological abuse within the definition of violence against women. Pakistani society has a whole long way to go in eliminating crimes against women but the response of the civil society provides a glimmer of hope for change.

References:

  1. https://www.hrw.org/world-report/2022/country-chapters/pakistan
  2. https://tribune.com.pk/story/2407440/217-killed-in-the-name-of-honour-in-2022-report
*Forensic Medicine Physician, Chief Police Surgeon, Karachi.

WHY DO WE NEED

Dr. Ziba Mir-Hosseini takes a “Meet the Professor” session online on “Islamic Feminism” during the Gender Ethics Module, December 2023 followed by a commentary from Dr. Khalid Masud, Judge, Shariat Appellate Bench, Supreme Court, Pakistan. Students interacted with both speakers on the topic.

WHY DO WE NEED “ISLAMIC FEMINISM”?

Ziba Mir-Hosseini*

Gender equality is a modern ideal, which has only recently, with the expansion of human rights and feminist discourses, become inherent to generally accepted conceptions of justice. But what presents Muslims today with a distinct problem is that family law and gender norms are still based on classical fiqh rulings that uphold a patriarchal model of family, treat women as second-class citizens, and place them under male authority.

The religious legitimation of patriarchy has been the subject of heated debate among Muslims since the early twentieth century. Feminist participants in this debate form two broad camps. The first are those who consider religion to be inherently patriarchal and see engagement with it to be a futile and incorrect strategy. The second group comprises those who see such an engagement as essential for a viable challenge to the hegemony of patriarchal interpretations of the Shari‘a. This second group (among which I include myself) by the 1990s had acquired the label of ‘Islamic feminists.’ They argue for the necessity of a brand of feminism that takes Islam as a source of legitimacy and confronts patriarchy from within the tradition.

One of the central challenges that Muslim women face in their struggle for equality is how to address in a systematic way the gap between modern notions of justice, in which equality is inherent, and ideas of justice that underpin established understandings of the Shari‘a, in which individuals are accorded rights on basis of their faith, status – and gender – as defined in classical fiqh. To bridge this gap, we need scholars and activists who can work together to bring fresh perspectives on Islamic teachings, and to explore common ground with advocates of human rights and feminism. We need constructive dialogue to overcome two blind spots in approaches to gender issues in Islam and human rights.

On the one hand, scholars of Islam are largely unaware of the importance of gender as a category of social analysis; they oppose both feminism, which they understand to mean women’s dominance of men, and human rights, which they see as alien to Islamic tradition. On the other hand, some feminists and human rights advocates have little knowledge or appreciation of religious modes of thought and religion-based laws, rejecting them as antithetical to their project. However, most women whose rights they champion are believers and live according to the teachings of Islam, thus effective change can come only through engagement with those teachings.

In other words, to achieve sustainable and deep-rooted change, we need dialogue and consensus. We should demonstrate the injustices that arise from patriarchal customs and laws based on the pre-modern interpretations of the Shari‘a, and offer defensible and coherent alternatives within a framework that recognizes equality and justice. But is this possible? Can we ground our claim to equality and arguments for reform simultaneously in Islamic and human rights frameworks? Can there be an egalitarian interpretation of Shari‘a?

Feminist voices and scholarship in Islam are part of the new wave of reformist thinkers that contend that the human understanding of Islam is flexible, that Islam allows change in the face of time, place and experience, and that Islam’s tenets can be interpreted to encourage both pluralism and democracy. But instead of searching (like earlier reformers) for an Islamic genealogy for modern concepts like gender equality, human rights, and democracy, they place the emphasis on how religion is understood and how religious knowledge is produced.

They do not reject an idea simply because it is Western, nor do they see Islam’s textual sources as providing a blueprint, a built-in programme of action for the social, economic, and  political problems of the Muslim world. What they give us is ethical guidance and principles for the creation of just laws. The Qur’an upholds justice and exhorts Muslims to stand for justice; but it does not define it. Rather, it indicates the path to follow, which is always time-bound and context-specific.

These thinkers have developed theories and strategies for reform. Chief among them are the distinctions between religion and religious knowledge and between the changeable and the unchangeable (mutable and immutable, accidentals and essentials, descriptive and prescriptive) in the texts; they seek to discern the aims (maqasid) of the Shari‘a, and to locate in their historical and political contexts both the sacred texts and the rulings that classical jurists derived from them.

Islamic feminists are re-inserting women’s concerns and voices – which were silenced by the time that the fiqh schools emerged – into the processes of production of religious knowledge and law making. In this sense, they must be seen as part of the larger struggle for the democratization of production of knowledge in Islam and for the authority to interpret its sacred texts.

In modern times, when nation-states have created uniform legal systems and selectively reformed and codified elements of classical Islamic law, and when new forms of political Islam have emerged that use Islamic law as an ideology, one of the main distinctions in the Islamic tradition has been distorted and elided. This is the distinction between Shari‘a and fiqh. In Muslim belief, Shari‘a is God’s will as revealed to the Prophet Muhammad. Fiqh, or jurisprudence, denotes the process of human endeavour to discern and extract legal rulings from the sacred sources, the Qur’an and the Sunnah. This distinction, which underlies the emergence of the various jurisprudential schools in the tradition, and, within them, a multiplicity of positions, has immense epistemological and political ramifications.

It allows contestation and change; it enables us to separate the legal from the sacred, and to ask basic questions such as, how do we know what the Shari‘a is? How do we know what we know about gender rights in Islam? Who decides what ‘Islam’ mandates? The distinction is therefore crucial to the arguments of committed feminists who choose to locate their feminism within Islamic tradition.

Let me end by saying that the close link between theology and politics can be a double-edged sword. It has been one of the main obstacles that Muslim women face; but it has also the potential to be an effective means for challenging patriarchal laws and unjust structures. The rise of political Islam in the second part of the twentieth century, and the politics of the ‘War on Terror’ in the present century, have shed new light on how ideological dichotomies such as ‘secular’ versus ‘religious’ feminism, or ‘Islam’ versus ‘human rights’ have masked the real site of the battle – the conflict between, on the one side, patriarchal and authoritarian structures, and, on the other, egalitarian and democratic ideologies and forces. If we recognize this, then we can aspire to real and meaningful change, and begin to transform the deep structures that have shaped our religious, cultural and political realities.

This is an abridged version of an article first published in Al-Raida Journal, Vol 44, Issue 2, 2020, pp. 85-91

*Professorial Research Associate, Centre for Islamic and Middle Eastern Law, University of London.

A journey through testing times

A journey through testing times

Mariam Hasan
PGD Alumnus, Clinical Researcher, Shaukat Khanum Memorial Cancer Hospital, Lahore.
Volume 10 Issue 1 June 2014

“….burning with curiosity, she ran across the field after it, and fortunately was just in time to see it pop down a large rabbit-hole under the hedge. In another moment down went Alice after it, never once considering how in the world she was to get out again.” (Lewis Carroll, Alice in Wonderland.)

Does autism run in your family?  Why is your sister like that? Was she born that way? I have spent a life time answering these questions never knowing the answers myself. My youngest sister, Eesha, was diagnosed with autism when I was twelve and she was a three year old baby. Needless to say my earliest memories surrounding the words hereditary and familial weren’t exactly pleasant, and they were often accompanied by a sense of confusion and a feeling of persecution. For the next few years Eesha remained a skeleton in the family closet. I entered the field of genetic research with this background baggage and rolled down the rabbit hole into the genetic wonderland filled with curiosity and wanting all sorts of answers.

My initial attempts at discussing genetic tests with families who had “pedigrees suggestive of a genetic predisposition” were clumsy and often awkward. I was scared of cancers and considered mutations a disease and had only begun adjusting into my role as a research officer who had a MBBS degree but was no longer a “doctor.” I was taking consents for research that often had “bad” or confusing results and which many times translated into life-altering decisions for the research participants. I struggled and stumbled in the dark with Urdu explanations for genes, hereditary illnesses, single nucleotide polymorphisms and other genetic paraphernalia for the next few years. I would love to say that eventually I had some genetic epiphany but of course that didn’t happen; however, over time some things did change.

On a personal level, over the years as I have entered further into the joyous and heart aching journey of raising an autistic sibling, I have become grateful for her silent, gentle presence in my life.  Over the years autism has changed too. It now has many names and shades and many genetic links have emerged through research. The unpredictable future of our unborn children sometimes still worries me and my siblings. We try not to remain complete hostage to such thoughts.  On the professional front, my encounters with genetic research participants have certainly changed over the course of time. The 70 year old “Amma,” whom I met the other day, was concerned about passing on her cancer to her daughters just like she got it from her mother, but could understand only few things in my simplified genetics 101 lesson. She wanted to talk and my time was the only thing I could offer. She left with a pat on my head and I was left humbly educated by her ability to see disease, disability and death as a natural flow of life and her complete acceptance of human genetic “imperfections.”

Over time, I have also learnt that doing genetic research means entering into a “relationship” with the research participant families. Besides the requisite information that I collect for research records, I hear about marital discords, the troublesome in laws, the nafarman aulad, (disobedient offspring) the nalaik bahu, (useless daughter-in-law) and every possible imaginable personal and family life issue, and often end up  giving lots of personal advice.  It’s also often hard to be just laying out clinical options for risk reduction without mixing it with some subjective often paternalistic advice.  Lastly, I believe, with the ever expanding “unknown” in genetic research, one of the greatest assets for a researcher is a certain amount of “genetic humility,” recognition of the inherent haziness of the genetic crystal ball and the fine line that separates prediction from pure speculation.

Eesha turned 26 last month. She gingerly accepted my hug but smiled widely at the birthday feast we had laid out for her party. I also recently came across an article about genetic testing of embryos to screen out genetic diseases. We all discussed it, perhaps might even consider it someday, but for now, whatever will be, will be…