Co-Director of CSSD project Social Justice After the Welfare State, Alice Kessler-Harris, is featured in a NYTimes article
Alice Kessler-Harris is featured in a NYTimes article on workplace power dynamics and the slow progress for women in traditionally 'masculine' fields. CSSD will host a book event with Kessler-Harris on April 4, 2018.
Alice Kessler-Harris is featured in a NYTimes article on workplace power dynamics and the slow progress for women in traditionally 'masculine' fields.
Kessler-Harris discusses the problems with characterizing certain jobs as ‘manly’ and the negative implications these have for women employed in these sectors.
Click here to read the article.
Alice Kessler-Harris is a co-director of CSSD project Social Justice after the Welfare State. She is also co-editor of the book “Democracy and the Welfare State: The Two Wests in the Age of Austerity,”
CSSD is hosting a book launch event for Democracy and the Welfare State: The Two Wests in the Age of Austerity on April 4, 2018.
Blog Post Now Available for CSSD Precision Medicine Event The Genomic Revolution, Genetics Counselors, and “Doing Ethics”
On January 22, CSSD/PM&S project Precision Medicine: Ethics, Politics, and Culture welcomed Dr. Susan Markens (CUNY-Lehman College) for its first talk of the semester, titled The Genomic Revolution, Genetics Counselors, and Doing Ethics.
On January 22, CSSD/PM&S project Precision Medicine: Ethics, Politics, and Culture welcomed Dr. Susan Markens (CUNY-Lehman College) for its first talk of the semester, titled The Genomic Revolution, Genetics Counselors, and Doing Ethics.
Dr. Markens' talk presented data primarily derived from forty-two qualitative interviews and was based on her research about the perspectives of genetic counselors towards the increasing availability and use of genetic science and testing.
The Precision Medicine lecture series represents a broad-based exploration of questions that precision medicine raises in law, ethics, the social sciences, economics, and the humanities.
Click here to read more about Dr. Markens talk on ethics and genetic counseling.
Essay Conceived in IRWGS seminar inspired by CSSD Project is Published in the New York Times Modern Love Column
Columbia University senior Bindu Bansinath wrote the first version of the newest Modern Love essay in the IRWGS undergraduate seminar Narrating Rape, taught by CSSD Director Marianne Hirsch.
Columbia University senior Bindu Bansinath wrote the first version of the newest Modern Love essay in the IRWGS undergraduate seminar Narrating Rape, taught by CSSD Director Marianne Hirsch.
Bansinath's essay “How ‘Lolita’ Freed Me From My Own Humbert” has been published today online and will be in this Sunday's print version of the New York Times as part of their popular Modern Love essay series. Her essay tells the story of a young woman’s struggle with abuse and her journey to reclaim her voice.
The Narrating Rape course is one of the outcomes of the Reframing Gendered Violence project at CSSD, part of the Women Creating Change initiative.
Dr. Susan Markens talks about ethics and genetic counseling with the CSSD/PM&S Precision Medicine group
On January 22, 2018, the Precision Medicine: Ethics, Politics, and Culture CSSD/PM&S working group welcomed Dr. Susan Markens (CUNY-Lehman College) for its first talk of the semester, titled The Genomic Revolution, Genetic Counselors, and “Doing Ethics.” Dr. Markens presented her qualitative findings based on her research about the perspectives of genetic counselors towards the increasing availability and use of genetic science and testing.
Dr. Markens focuses on studying how the new advances in genetic science are translated and perceived, particularly from the point of view of genetic counselors. She presented the following questions during her talk: 1) What are the perspectives of genetic counselors on ethical issues emerging from recent advances in genetic technology? and 2) What do they consider to be their goals and professional responsibilities?
The talk presented data primarily derived from forty-two qualitative interviews, the vast majority of which were with board certified genetic counselors. Additional supporting materials drew from attendance at professional conferences, webinars, and talks, and also newspapers and other publications.
Genetic Counseling as a Profession
Historian Alexandra Minna Stern defined the birth and development of the genetic counseling profession as a "quiet revolution,” in particular starting after the establishment of the first degree in genetic counseling at Sarah Lawrence College in 1969 and later of a certification exam in 1981. By the end of 2017, the United States had a total of 37 accredited programs and over 4,000 certified genetic counselors.
Previously, genetic counselors primarily worked in prenatal counseling and pediatrics, and their role is now expanding to topics related to cancer and multiple overlapping areas. Cancer counseling has grown alongside the scientific advances in the last decades, becoming more and more popular in an industry setting. Genetic counselors play a pivotal role in terms of translating information for patients, having both a background in the sciences and other psychosocial aspects. "Non-directedness" is considered to be among the tenets of the profession, but not without controversy, given professional's different existing approaches, fields of expertise, and perspectives. Nonetheless, patient autonomy always remains as the cardinal value.
In Dr. Markens’s interviews, many genetic counselors highlighted the uniqueness of their profession: one interviewee noted that "most other professions will recommend we just tell them what is available" alongside "benefits, limitations, and risks,” whereas genetic counselors describe themselves as providers of information, allowing patients to make decisions in an informed way. From a patient-centered perspective, their agenda consists in learning information about their patients, providing them information about genetic testing, and answering any questions that may arise.
Advances in and Impact of Genetic Testing and Knowledge: Views of Genetic Counselors
Overall, genetic counselors are enthusiastic about the advances in genetic science, calling it “positive,” “very exciting,” and “important.” In describing their motivation in pursuing their profession, one interviewee mentioned “empower patients to understand more about decisions” as one of their primary goals. At the same time, genetic counselors are aware of the complications introduced by such overwhelming “availability of information;” it is “frequently anxiety provoking,” leading to a “long line of testing,” “ambiguous results,” and “limited information.” As the stress behind “knowing the little things” accumulates, it “takes the fun out of pregnancy.”
Dr. Markens points to genetic counselors' nuanced understanding of pros and cons as “reflective ambivalence.” Where is the line between giving the “right amount” of information, and “just too much?” In being part of the process, genetic counselors see both sides of the coin, mentioning episodes in which they regretted providing additional information in talking with their patients. “Maybe we are testing too much given what we know right now,” commented one interviewee.
Dr. Markens reports genetic counselors pointing to the need to have solid justifications prior to ordering tests. There is a tendency to “just go ahead and test,” and some interviewees observed that it feels they are just ordering tests without thinking about it. As results come back with incidental findings, genetic counselors find themselves wishing they had not ordered as many tests. Often, results are unclear: “that level of uncertainty for people can be jarring. And for me as a clinician, I don’t like it either,” since it's “really hard to provide any level of reassurance to a patient.” All interviewees firmly confirmed that they are not “anti-testing,” but they expressed their efforts to grapple with the implications of their work.
The Role of Genetic Counselors in Private Industry
In highlighting the interaction between genetic counselors and the private industry for genetic tests, Dr. Markens introduced themes that highlighted 1) the role private industry plays in bringing genetic tests to market for consumers, 2) the impact that industry has had on consumers’ perceptions and choices for testing, 3) the interplay between academic channels of communication and clinical genetic counselors, 4) the implications of being a genetic counselor in the industry, and 5) how the growth in the private genetic testing industry impacts the expectations of both consumers and genetic counselors.
The impact of private industry upon the availability of testing for non-professionals has been of growing concern among genetic counselors. Specifically, there is a disparity between informed testing, with limited knowledge, and making informed choices for testing. The genetic counselors note that this ill-informed movement is driven by the industry's push for testing among all consumers (“there is a lot of push to get it [genetic tests] out there”). This has led to the transformation of genetic testing as a “part of the routine care” instead of an option under circumstances where the results would be informative for medical decisions.
Dr. Markens highlights how this push from the genetic testing industry has not been unidirectional, but rather has been in response to a growing demand from lay consumers. This interplay between the growing industry and consumer demand has been expressed in interactions between consumers and genetic counselors. The counselors, limited in number, have been inundated with demands for testing, often without consult; as one counselor notes “people want to do all this genetic testing without genetic counseling, and they maybe don’t really know how it could impact them emotionally and financially.” Due to the limited number of genetic counselors available, questions regarding how to inform all potential consumers and how to educate providers have come up in these interviews. The disparity between the need for clinical genetic counselors and the demand, as noted by the interviewees, is made more substantial by the rising demand for the counselors in industry.
In attending professional conference and webinars targeted for genetic counselors, Dr. Markens presented her observations about how the private industry interacts with counselors in these settings. Unlike other social science conferences, Dr. Markens noted that the resources allocated for the professional conference where genetic counselors would be present were primarily funded by private industry. Additionally, she observed that the drivers of research in the area of genetic testing was often from private industry groups and funded by pharmaceutical and testing companies instead of academic researchers.
Building from her observation at professional conferences and narratives collected through interviews, Dr. Markens highlights the implications of being a genetic counselor in private industry. Specifically, the increased demand from private industry has led to the creation of something akin to a pipeline between genetic counselors in training and industry jobs. Although not the initial goal of many counselors in training, “people are getting hired right away, and clinical positions are open because they are going into industry.” Dr. Markens notes that this has led to the creation of a significant paucity of clinical genetic counselors and the narratives from other genetic counselors has mirrored this, noting that the private industry counselors offer their services for counseling when there are not enough counselors available. This exchange brought up concerns about the conflict of interest between parties, where the industry counselor’s alliance may be to the company and not the consumer. In contrast to these perspectives by clinical genetic counselors, those counselors in industry see their role as being essential to be able to inform and change the industry practices from within.
In bridging the lessons learned across these narratives, Dr. Markens presented her findings on how to manage the expectations of all those involved in the genetic testing process. There was a resounding agreement across interviews that there is a need to ground the field in the research and actuality of what we know and do not know. Building from the perspectives on the growth of knowledge about genetics and genetic testing, there is a real need to “manage our expectations of what the testing is going to give us.” This has been most notably impacting the process of informed consent, specifically, seeking to clarify what it is that the consumer would want to know about the process and potential outcomes. Dr. Markens highlighted a “need to change our focus from the definition of ethical principles in their abstract form to looking at their practical application,” such that the realities of testing are no longer a hypothetical scenario, but rather a reality that is present every day in the lives of genetic counselors.
Follow Up Questions and Discussions
At the close of Dr. Markens’s presentation, the audience, representing a diverse group of practitioners, scientists, and members of the larger academic community, was left with many thoughts and questions. In this discussion were encompassed questions about the future of the field and how those still in training can be a part of the movement to revitalize the core precepts of genetic counseling. There was a call for more diversity in the gender and race of genetic counselors and a clarity in the training provided to instill confidence in counselors to inform not only the consumer, but also others within the medical profession.
Some way in which these changes are currently being implemented involve genetic counselors being the ones to sign-off on the types of tests that can be requested as well as providing training and intervention to physicians to better inform them of the choices they have for requesting tests. In reflection, the overall tone and temperament of those in the room was of hope and a willingness to be creators of change in this field.
Contributed by Natalia Romano Spica and Amar Mandavia
Gayatri Chakravorty Spivak Delivers Keynote Lecture at Dhaka Art Summit
Gayatri Chakravorty Spivak, co-director of the CSSD project The Rural-Urban Interface: Gender and Poverty in Ghana and Kenya, recently delivered the keynote lecture at the 2018 Dhaka Art Summit.
Gayatri Chakravorty Spivak, co-director of the CSSD project The Rural-Urban Interface: Gender and Poverty in Ghana and Kenya, recently delivered the keynote lecture at the 2018 Dhaka Art Summit. Professor Spivak’s keynote address “addressed the precarious situation of the Rohingya people in relation to Indigeneity in the world today, with a special emphasis on the languages of the Bengal region.”
Professor Spivak’s keynote lecture received news coverage in the Dhaka Tribune, and is available to watch online in full here.
Gayatri Chakravorty Spivak is co-director of the CSSD project The Rural-Urban Interface: Gender and Poverty in Kenya and Ghana, Statistics and Stories. Spivak is also University Professor of Humanities at Columbia University and a founding member of CSSD affiliate the Institute for Comparative Literature and Society.
CSSD project Gender & The Global Slum featured at the inaugural “She Opened The Door” Conference
CSSD executive committee members Anupama Rao and Ana Paulina Lee presented research from the CSSD working group Gender and the Global Slum at the inaugural She Opened the Door: Columbia University Women's Conference.
CSSD executive committee members Anupama Rao and Ana Paulina Lee presented research from the CSSD working group Gender and the Global Slum at the inaugural She Opened the Door: Columbia University Women's Conference.
On February 9-11, 2018, more than 1,000 alumni and students convened at She Opened the Door for a weekend of celebrating, learning from, and expanding horizons with fellow Columbia alumnae who are making a difference in our world.
Rao and Lee were among a distinguished group of faculty from Columbia and Barnard to present fascinating, new research in TED-type talks and describe how their findings can impact women in various key ways. Their talk discussed how women in international urban slums address the urgent problems of poverty and social exclusion.
Notable Columbia alumnae speakers at the conference included Supreme Court Associate Justice Ruth Bader Ginsburg ’59LAW, Poppy Harlow ‘05CC, Abigail Disney ’87, ‘94GSAS, A’Lelia Bundles ’76JRN, Claire Shipman ‘86CC, ‘94SIPA, and more.
“She Opened the Door” is a tribute to Winifred Edgerton Merrill. She was the first woman to receive a degree from Columbia University, opening the door for women to gain admission to Columbia's graduate and professional Schools at a time when co-education for women was under heavy debate.
CSSD project Gender & the Global Slum looks at the social hazards of urban informality and its disproportionate effects on women.
Click here to watch the conversation with Justice Ginsburg.
Anupama Rao and Ana Paulina Lee at the conference
Alice Kessler-Harris named to the Board of Governors of the Edward M. Kennedy Prize
CSSD Project Co-Director Alice Kessler-Harris has been named to the Board of Governors of the Edward M. Kennedy Prize for Drama Inspired by American History.
CSSD Project Co-Director Alice Kessler-Harris has been named to the Board of Governors of the Edward M. Kennedy Prize for Drama Inspired by American History. The prize, established in honor of the late senator, awards $100,000 to “a new play or musical that enlists theater’s power to explore the past of the United States, to participate meaningfully in the great issues of our day through public conversation, grounded in historical understanding.” Kessler-Harris joins fellow CSSD Project Co-Director Jean Howard on the Board of Governors.
Kessler-Harris was Co-Director of CSSD Project Social Justice After the Welfare State, and is both R. Gordon Hoxie Professor Emerita of American History and Professor Emerita at the Institute for Research on Women, Gender, and Sexuality at Columbia University. CSSD eagerly looks forward to hosting a panel, “Democracy After the Welfare State”, in honor of the publication of Democracy and the Welfare State: The Two Wests in the Age of Austerity, edited by Kessler-Harris and Maurizio Vaudagna.
Jack Halberstam comments on RuPaul’s Drag Race in The New York Times Magazine
CSSD Project Director Jack Halberstam spoke with New York Times staff writer Jenna Wortham for “Is RuPaul’s Drag Race the Most Radical Show on TV?”, published in the January 28th, 2018 edition of The New York Times Magazine.
CSSD Project Director Jack Halberstam spoke with New York Times staff writer Jenna Wortham for “Is RuPaul’s Drag Race the Most Radical Show on TV?”, published in the January 28th, 2018 edition of The New York Times Magazine.
Halberstam spoke about issues of gender, representation, and power dynamics in RuPaul’s Drag Race, pointing out that “there’s no ‘RuPaul’s Drag Kings...we still have this idea that femininity is malleable, and masculinity is a protected domain of real power and privilege. It is not transferable or attainable. The public has no appetite for artificial masculinity.”
Halberstam is the Project Director of CSSD’s Queer Theory: Here, Now, and Everywhere, a working group created to “discuss, debate and investigate the politics of sexuality and gender in a global frame.” Halberstam is also Professor of Women’s, Gender, and Sexuality Studies and English and Comparative Literature at Columbia University.
New Yorker article about the work of Jennifer Hirsch on the SHIFT project at Columbia
The work of Jennifer Hirsch, co-director of the CSSD project Reframing Gendered Violence, is featured in an article by New Yorker staff writer Jia Tolentino. This work was discussed at the October 5, 2017 CSSD event Beyond Prevalence.
Jia Tolentino has published an article entitled "Safer Spaces" in the February 12 & 19, 2018 print issue of New Yorker magazine. In this article, Tolentino highlights the work of Jennifer Hirsch, co-director of CSSD project Reframing Gendered Violence (RGV), on the SHIFT program at Columbia. SHIFT is a comprehensive research project that examines the many factors that shape sexual health and sexual violence for undergrads at Columbia.
You can read the full New Yorker article online here.
In October 2017, Professor Hirsch convened a panel discussion called Beyond Prevalence: The Next Generation of Research on Campus Sexual Assault, as part of the RGV project at CSSD. A video of that event can be found on the CSSD YouTube channel here.
RGFGV Media Fellows Yasmin El-Rifae and Samira Shackle Publish Articles on TheNation.com and ProspectMagazine.co.uk
CSSD Project Religion and the Global Framing of Gender Violence held an international competition and selected three Media Fellows to receive reporting grants. They joined the project, supported by the Henry Luce Foundation, and did research in the Middle East to produce innovative media stories.
CSSD Project Religion and the Global Framing of Gender Violence held an international competition and selected three Media Fellows to receive reporting grants. They joined the project, supported by the Henry Luce Foundation, and did research in the Middle East to produce innovative media stories.
Yasmin El-Rifae describes her experience with a volunteer feminist group resisting sexual violence that formed during the Egyptian Revolution. Her article ‘What the Egyptian Revolution Can Offer #MeToo’, highlights the way Egyptian activists are using self-organized, direct, and offensive tactics to fight sexual violence. In this era of the #MeToo movement, El-Rifae urges her readers to move towards a feminist praxis that creates global and systemic change and to look to Egyptian feminists for direction.
In her article ‘The Bureaucracy of Isis’, Samira Shackle looks at the dilemmas involved in the quest for restorative justice in Mosul post-ISIS. Focusing on the experience of refugee women, she reframes dominant narratives about religion and gender-based violence. Shackle’s interviews with family members of ISIS collaborators and victims of ISIS violence uncover how women suffer violence at the hands of family, the state, and ultimately how much human suffering has been created by imperialist interventions in Iraq.
Video Available from RGV Event “Beyond Prevalence: The Next Generation of Research on Campus Sexual Assault”
Video from "Beyond Prevalence: The Next Generation of Research on Campus Sexual Assault," part of the CSSD project Reframing Gendered Violence, is now available on the CSSD YouTube channel.
On October 5, 2017, leading researchers from across the country presented at the panel, “Beyond Prevalence: The Next Generation of Research on Campus Sexual Assault.” Organized and moderated by Jennifer S. Hirsch, co-Principal Investigator of Columbia’s ground-breaking Sexual Health Initiative to Foster Transformation, the panelists presented new and emerging work on environmental drivers of campus sexual assault, and discussed the institutional challenges of conducting research on campus sexual violence at universities seeking to comply with Title IX guidance.
The October 5 forum was part of the CSSD Reframing Gendered Violence series of panels and seminars applying critical perspectives from the social sciences and humanities to gender violence. Reframing Gendered Violence is a two-year-long project of Columbia’s Center for the Study of Social Difference and is supported by a grant from the University’s Dean of Humanities.
Video is available here.
Anupama Rao publishes Gender, Caste and the Imagination of Equality
CSSD project co-director Anupama Rao has published the edited volume Gender, Caste, and the Imagination of Equality.
CSSD project co-director Anupama Rao has published the edited volume Gender, Caste, and the Imagination of Equality. This volume, published by Women Unlimited, features essays that examine the relationship between gender, caste, class, and political agency in the context of ongoing, rapid social transformation in contemporary India.
Anupama Rao is a current member of the Center for the Study of Social Difference Executive Committee, as well as co-director of CSSD projects Reframing Gendered Violence and Gender & the Global Slum. Rao is associate professor of History at Barnard College, and Associate Director of the Institute for Comparative Literature and Society at Columbia University.
New blog post from Precision Medicine working group about research of Dr. Kadija Ferryman
On November 20, 2017, Kadija Ferryman discussed her Fairness in Precision Medicine project with the Precision Medicine: Ethics, Politics, and Culture CSSD working group
Kadija Ferryman’s talk on November 30, 2017 for the Precision Medicine: Ethics, Politics, and Culture CSSD working group drew from her post-doctoral project, “Fairness in Precision Medicine,” a study on which she is co-PI with danah boyd at the Data and Society Institute.
You can read the full post, written by Precision Medicine graduate fellows Larry Au and Jade H. Tan, here.
Kadija Ferryman: “Fairness in Precision Medicine”
Kadija Ferryman’s talk on November 30, 2017 for the Precision Medicine: Ethics, Politics, and Culture CSSD working group drew from her post-doctoral project, “Fairness in Precision Medicine,” a study on which she is co-PI with danah boyd at the Data and Society Institute.
The question that motivates Ferryman’s work is: How do ethical and moral frames change the way we understand health data and outcome? Using content analyses of policy documents, observations of conferences, a mapping of major precision medicine projects, and interviews with 21 experts, Ferryman honed in on two sets of biases that various stakeholders recognized: embedded biases and biases in outcome. Regarding embedded biases, experts were concerned about biases in sampling of research data such as electronic health records. For biases in outcome, the stakeholders interviewed were worried about how precision medicine can exacerbate already existing inequalities.
Crucially, Ferryman emphasized that these biases should be thought about in relation to genomic data, but also the various data types that precision medicine relies on, such as electronic medical records, the “Internet of Medical Things,” and mobile and digital technologies. As such, Ferryman argued that those concerned about precision medicine should pay attention to discussions in “big data” and “algorithmic bias,” and that bioethics and “data ethics” could learn from each other.
In the meeting of the Precision Medicine working group the next day, several themes emerged from our discussion:
Correcting for Bias
A question raised during the meeting touched on how experts who recognize that bias exists can come up with strategies to correct these biases. For example, policy makers and researchers worried about diversity in precision medicine have made the recruitment of minority subjects a centerpiece of All of Us. This is also an instance of agreement on the existence of bias between different experts in precision medicine. Thus, finding more areas of agreement between different stakeholders is crucial in building the alliance of political capital, policy know-how, and technical expertise necessary to correct for biases that may arise with the introduction of precision medicine.
Different Data Types
From the standpoint of social scientists and humanists, the inclusion of different types of data in precision medicine efforts is definitely welcomed, as decades of public health research has recognized the importance of environmental and social factors in shaping health outcomes. Nonetheless, important questions here remain regarding the ability of precision medicine to reconcile the characteristics of different data types. For instance: How do biomedical researchers view these types of more qualitative data versus more quantifiable and “scientific” data types? How are different types of evidence evaluated by scientists? Relatedly, the work of linking disparate data types and recognizing patterns between them requires complex technical expertise. As such, more work should be devoted to thinking through how to integrate these various types of data to create a precise, but complete picture of an individual’s health.
Ethics in the Health Industry: “Precisely” Where Are We Headed?
Health and the data it generates are increasingly commodified. From private tech companies to healthcare providers, precision medicine ushers in greater opportunities to wield personalized health data for commercial use. This raises parallel concerns regarding the ethical use and handling of our personal information. From targeted Facebook shopping ads to Netflix recommendations, we trade our information and data privacy for access to services and convenience. Mass personalization at its current stage generally produces innocuous, if eerie, results. We retain a sense of autonomy and choice to partake in these services and disengage if we choose. As health and genomic personalization approaches arrive in the healthcare space, however, the ability to opt-out becomes much more constrained. Health is foundational in enabling meaningful engagement and participation in society. Greater integration of individual data into the healthcare system provides an opportunity for better care, but brings into question the genuine ability to opt-out of such a system in the future.
With the rise in personal health data spurred by the “Internet of Medical Things” (IoMT) and devices, we are afforded insight into not only genetic profiles, but behavioral, lifestyle, and environmental dimensions of individuals. Their implications extend beyond clinical contexts. Employers, not unreasonably, seek employee health data in pursuit of optimizing efficiency and a more productive workforce. More sinisterly, employment discrimination based on health is the next addition to contemporary concerns that include disability, race, gender, and sexual orientation.
Other ethical concerns flow more directly from technology and automated algorithms we increasingly use to analyze data. Our artificial intelligence and neural networks pick up the deeply ingrained racial and gender prejudices concealed within patterns of language, imagery, and social cues in our datasets. If we are not vigilant about policing these embedded beliefs, algorithmic bias may result in and reinforce discriminatory and exclusionary practices.
Involving the Community and Public Voice
Part of guarding against bias and discrimination involves engaging the communities directly impacted by this research. This may come in the form of Institutional Review Board (IRB) assessments or consulting local Community Board representatives drawn from the affected population. Even the selection of chosen representatives to give voice to a community, however, can be fraught with complications. How are such representatives selected -- by appointment or election, and by whom? Are those who end up on the Community Board truly representative of the community’s views? What are the power dynamics and hierarchies within that community influencing who is selected? In any structure, the intricacies of human relational and power dynamics play a tangible and meaningful presence, impacting the strength of community voice in discussion and decision-making. We need to be cognizant of such complexities when implementing structures and ensure they embody the representative democratic principles we value.
While the day-to-day responsibilities of IRB members largely involve checking off applications, on the macroscale, the arc and pattern of their decisions set precedents. As Ferryman poignantly questioned in discussing her role on the IRB board, “Are we the ethical conscience of a project?” A concern present in these circles is that passing IRB review or consulting Community Board representatives may become an ethics “check-off,” rather than a genuine partnership in understanding and appreciating the potential impact of their research on populations. We want and encourage research investigators, however, to consult ethics reviews and boards, recognizing they may not have the expertise to deal with these issues. “Seeking ethical assistance” is instinctive behavior we want to standardize in future precision medicine research.
As AI and health technology increasingly infiltrate daily life outside clinical contexts and the definition of health data is expanding, the modern role of bioethics may also need to evolve and cross traditional disciplines. Precision medicine is a collaborative effort that requires multiple perspectives. If this discussion imparted one actionable recommendation, it is that the scientific fields must call upon their ethical counterparts. Ethics is not an ancillary component of precision medicine, but a fundamental one in actualizing our communal vision for precision medicine.
Building Public Trust and Responsibility
The success of the All of Us study and other human genomic research requires the generous contribution of personal health and genomic data from individuals. This partnership between the public and science is needed to realize the network effects of a robust genetic database, and usher in a new model of precision healthcare that generations will benefit from. Building public trust is critical to these efforts, and without it, achieving a precision medicine approach will be a long and arduous process. While the U.S. culture naturally lends itself towards great suspicion of state power in these contexts, government imposes desirable safety regulations and constraints on profit-maximizing corporations. Designing ethical guidelines and a comprehensive regulatory landscape is important to enable proper oversight.
Conclusion: Ethics as a Partnership
Our unfolding discussion on the array of challenges that precision medicine poses increasingly points towards a more active and potent role of modern ethics in both industry and academic research. Precision medicine and our advancing abilities to arrange massive amounts of data herald great promises for our capacity to improve human health, behavior, and lifestyles. We must ensure ethical and regulatory safeguards keep pace with these abilities and align them with our core values on equity, fairness, privacy, autonomy, etc. Protecting these rights and evolving policy to reflect these ethical principles is key to ensuring our society does not stray onto a dystopic path.
Contributed by Larry Au and Jade H. Tan
RGFGV Media Fellow Nafeesa Syeed Publishes Article on Bloomberg.com
Nafeesa Syeed's article ‘Women Flee a Hellscape in Yemen. Here are Their Lives Now’, highlights the way refugee women are using entrepreneurship to adapt to their new realities.
CSSD Project Religion and the Global Framing of Gender Violence held an international competition and selected three Media Fellows to receive reporting grants. They joined the project, supported by the Henry Luce Foundation, and did research in the Middle East to produce innovative media stories.
Nafeesa Syeed focuses on the struggles and achievements of Yemeni women in the midst of US and Saudi-led war campaigns. Through interviews with Djibouti-based Yemeni women living in refugee camps and active young Yemeni women in Amman, Jordan, she shows how women are framing their experiences of violence and war and assessing their changing social roles. Her article ‘Women Flee a Hellscape in Yemen. Here are Their Lives Now’, highlights the way refugee women are using entrepreneurship to adapt to their new realities.
Reframing Gendered Violence presented "Gender and the Technologies of State Violence" in November
On November 16, 2017, the CSSD working group Reframing Gendered Violence presented "Gender and the Technologies of State Violence: Innocence-Disposability-Resilience" in the Case Lounge of Jerome Greene Hall at Columbia Law School, along with the Center for Gender and Sexuality Law.
“The Reframing Gendered Violence project seeks to engage critically with the terms, assumptions, and policies that have underwritten an outpouring of attention and activism over the last couple of decades on violence against women and gender-based violence,” explained project co-director Lila Abu-Lughod, Joseph L. Buttenwiser Professor of Social Science, as she introduced speakers Sherene Razack, Nadera Shalhoub-Kevorkian, and Miriam Ticktin.
In keeping with the objectives articulated by Abu-Lughod, “Gender and the Technologies of State Violence” offered several compelling approaches to the problem of gender-based violence. The sixth installment of the two-year Reframing Gendered Violence project within the Women Creating Change initiative at the Center for the Study of Social Difference, it was co-sponsored by the Dean of the Humanities and the Columbia Global Centers.
Sherene Razack, Department of Gender Studies at UCLA, opened the panel with a paper entitled “Where Is Settler Colonialism In Analyses Of Gender Violence?” “How do you analyze the violence that comes at indigenous women, remembering the fact of settler colonialism?” she asked. “And how do male colonizers come to know themselves through violent encounters with indigenous women?”
Nadera Shalhoub-Kevorkian, Law School, Hebrew University, approached similar questions in the context of Israeli settler colonialism in her paper “Should State Violence Against School Girls Be Called Gender Based Violence?” Pairing the testimony of Palestinian school girls with photographs of their harassment by Israeli soldiers, she showed how state violence can also manifest as gendered violence.
Elaborating on the insights of Razack and Kevorkian, Miriam Ticktin, Department of Anthropology, New School University, concluded the panel with a paper titled, “Would Getting Rid Of The Concept Of Innocence Enable Us To Address Gendered And Racist Violence?” “Innocence has moved to the center of political life today,” argued Ticktin. And yet, “only some people in some places get noticed when innocence is what draws our attention...Ideas and images of innocence and the moral authority they engender have a long history of actually hurting the people they intend to help.”
The Reframing Gendered Violence project will continue on January 25 with a panel on “Interrogating culture-based explanations for violence against women.”
Contributed by Liza McIntosh
Marianne Hirsch delivers keynote address at Memory Studies Association Conference
CSSD Director Marianne Hirsch delivered the keynote address at the second annual Memory Studies Association Conference, December 15, 2017.
CSSD Director Marianne Hirsch delivered the keynote address at the second annual Memory Studies Association Conference, December 15, 2017.
Hirsch’s address, “Stateless Memories”, further develops her pioneering work in the field of memory studies, calling into question the ethnocentrism of dominant memory cultures and looking instead for progressive ways of developing collective memories outside the bounds of national monuments.
Marianne Hirsch is Director of the Center for the Study of Social Difference, as well as William Peterfield Trent Professor of English and Comparative Literature at Columbia University and Professor in the Institute for Research on Women, Gender, and Sexuality. She is co-director of the CSSD projects Women Mobilizing Memory, Engendering the Archive, and Reframing Gendered Violence.
Gayatri Chakravorty Spivak delivers inaugural lecture for International Colloquium on Creative Teaching and Learning in Higher Education
CSSD project co-director Gayatri Chakravorty Spivak delivered the inaugural lecture at the International Colloquium on Creative Teaching and Learning in Higher Education, at Sullamussalam Science College, December 12, 2017.
CSSD project co-director Gayatri Chakravorty Spivak delivered the inaugural lecture at the International Colloquium on Creative Teaching and Learning in Higher Education, at Sullamussalam Science College, December 12, 2017.
Spivak’s address, which was followed by a panel discussion, “Spivak with Alternative Educators”, argued that “higher education means flexibility of imagination,” encouraging university students and faculty alike to pursue global research that extends beyond the university itself. The address is available to watch online, and further coverage is available at The Hindu.
Gayatri Chakravorty Spivak is co-director of the CSSD project The Rural-Urban Interface: Gender and Poverty in Kenya and Ghana, Statistics and Stories. Spivak is also University Professor of Humanities at Columbia University and a founding member of CSSD affiliate the Institute for Comparative Literature and Society.
RGFGV Media Fellow Samira Shackle Publishes Three Articles
Samira Shackle published three articles on refugee women’s active responses to gender-based violence and poverty in Iraq and Lebanon.
CSSD’s Project on Religion and the Global Framing of Gender Violence awarded reporting grants to three Media Fellows who joined the project in September. After participating in an international workshop with scholars and activists hosted at the Columbia Global Center in Amman, they traveled in the Middle East to research stories that could reframe understandings of the relationship between gender violence and religion.
Samira Shackle published three articles on refugee women’s active responses to gender-based violence and poverty in Iraq and Lebanon.
Yazidis in Iraq: 'The genocide is ongoing'
The Refugee Whose Husband Sold Her Into Sex Slavery
Hairdressing, sewing, cooking – is this really how we're going to empower women?
Frances Negrón-Muntaner Interviewed by EuropeNow
Co-director of the CSSD project Unpayable Debt, Frances Negrón-Muntaner, is interviewed by EuropeNow as part of their special feature on Diversity, Security, Mobility: Challenges for Eastern Europe.
Frances Negrón-Muntaner was interviewed by EuropeNow as part of their special feature on Diversity, Security, Mobility: Challenges for Eastern Europe.
In the interview, Negrón-Muntaner discusses her interest in creating archives, especially for marginalized groups, as sources for community building, collective memory, and the production of new knowledge and complex stories. She also details her work creating an archive in the digital space and discusses her contribution to the Roma Peoples Project, an initiative that spotlights Roma peoples and expands Roma studies.
Frances Negrón-Muntaner is co-director for the CSSD project Unpayable Debt: Capital, Violence, And The New Global Economy.