Narrative Equity in Genomic Screening at the Population Level

Noninvasive prenatal testing (NIPT) promises to enhance women's reproductive autonomy by providing genetic information about the fetus, especially in the detection of genetic impairments like Down syndrome (DS). In practice, however, NIPT provides opportunities for intensified manipulation and control over women's reproductive decisions. Applying Miranda Fricker's concept of epistemic injustice to prenatal screening, this article analyzes how medical professionals impair reproductive decision-making by perpetuating testimonial injustice. They do so by discrediting positive parental testimony about what it is like to raise a child with DS. We argue that this testimonial injustice constitutes a twofold harm: (1) people with DS and their family members who claim that parenting a child with DS may be a rewarding and joyous experience are harmed when they are systematically silenced, disbelieved, and/or denied epistemic credibility by medical professionals, and (2) pregnant women are harmed since they might make poorly informed choices without access to all relevant information. The broader implication of the analysis is that epistemic justice is a precondition of reproductive autonomy. We conclude by calling for federal oversight of the acquisition and dissemination of information that prospective parents receive following a positive diagnosis of DS to ensure that it is comprehensive and up to date.

Medical Humanities, 2021

This essay explores the complex entanglement of new reproductive technologies, genetics, health economics, rights-based discourses and ethical considerations of the value of human life with particular reference to representations of Down's syndrome and the identification of trisomy 21. Prompted by the debates that have occurred in the wake of the adoption of noninvasive prenatal testing (NIPT), the essay considers the representation of Down's syndrome and prenatal testing in bioethical discourse, feminist writings on reproductive autonomy and disability studies and in a work of popular fiction, Yrsa Sigurdardóttir's Someone To Look Over Me (2013), a novel set in Iceland during the post-2008 financial crisis. It argues that the conjunction of neo-utilitarian and neoliberal and biomedical models produce a hostile environment in which the concrete particularities of disabled people's lives and experiences are placed under erasure for a 'genetic fiction' that imagines the life of the 'not yet born' infant with Down's syndrome as depleted, diminished and burdensome. With close reference to the depiction of Down's syndrome and learning disability in the novel, my reading explores the ways in which the generic conventions of crime fiction intersect with ideas about economics, politics and learning disability, to mediate an exploration of human value and social justice that troubles dominant deficit-led constructions of disability.

Legal and Political Theory in the Post-National Age, CEE-Forum for Legal, Political, and Social Theory Yearbook, Péter Cserne and Miklós Könczöl (eds.), Peter Lang Verlag, 2011

e paper addresses the issue of the necessary scope of legal protection of a person in the age of genomic medicine. More speci cally, the paper aims at analysing the problem of genetic discrimination and identifying justi ed restrictions on the use of genetic test results and genetic information, especially in the areas of employment and insurance. ere will be discussed the main controversies that arise when the legal restrictions on the use of genetic information are at stake.

Studies in Law, Politics, and Society, 2018

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of the disabled body in public deliberations over reproductive and genetic politics that use disability to frame arguments about which bodies are worthy of protection, how and why we limit reproductive choices, and what reasons women may use to terminate their pregnancies. The disability critique of prenatal testing and selective abortion finds itself in productive tension with reproductive rights politics, which increasingly features disability in both pro-life and pro-choice messages. The uneasy alliance between disability and pro-life interests has profound implications for both disability legal scholarship and the sociolegal inquiry into the role of rights articulation-and rejection-by social movements.

Journal of health care law and policy, 2020

I. SETTING THE BIOETHICS STAGE Many bioethical challenges surround the promise of genomic technology and the power of genomic information, 1 providing a rich context for critically exploring underlying bioethical traditions and foundations as well as the practice of multidisciplinary advisory committees. Karen and I long appreciated, independently and together, that the teaching of contemporary bioethics with creative approaches provides a significant opportunity to reexamine our disciplines' underpinnings while addressing thorny issues by casting light on the implications of genomics. Of particular interest to Karen, and me, are

Medical Humanities, 2021

This essay explores the complex entanglement of new reproductive technologies, genetics, health economics, rights-based discourses and ethical considerations of the value of human life with particular reference to representations of Down’s syndrome and the identification of trisomy 21. Prompted by the debates that have occurred in the wake of the adoption of non-invasive prenatal testing (NIPT), the essay considers the representation of Down’s syndrome and prenatal testing in bioethical discourse, feminist writings on reproductive autonomy and disability studies and in a work of popular fiction, Yrsa Sigurdardóttir’s Someone To Look Over Me (2013), a novel set in Iceland during the post-2008 financial crisis. It argues that the conjunction of neo-utilitarian and neoliberal and biomedical models produce a hostile environment in which the concrete particularities of disabled people’s lives and experiences are placed under erasure for a ‘genetic fiction’ that imagines the life of the ‘...

2013

Genetics can do more than predict, explain or help treat medical conditions-it can create new ones. The social sciences have assumed that genetics must work in and through existing ! ! i! Table of Contents List of tables and figures ii Introduction 1 Part I 1. From mutations to new medical conditions 21 2. The varieties of genomic designation: 52 Multiple pathways and an ideal-typical typology of syndromes Part II Introduction 85 3. Immobile mutations: Nowhere to go in the 1960s and 70s and the exception that proves the rule 4. Of elves, warriors and autistics: Leveraging abnormality in genetics research and advocacy 5. The trading zone of autism genetics: Looping and the intersection of genomic and psychiatric classification 6. Assembling a new kind of person: Mobilizing mutations and realigning illness Conclusion References 395 ! ! ii! The first note of thanks has to go to all the families, advocates and biomedical experts who have taken the time to talk to a sociologist prying into their research, practice and lives. I look forward to more over the coming years. The Binational Science Foundation, Mellon Foundation and Columbia's Lindt and Lazarsfeld Fellowships, its Institute for Social and Economic Research and Policy and the Department of Sociology all provided crucial support while I was formulating, researching and writing the dissertation.

Journal of Community Genetics, 2012

New screening possibilities become available at a high rate, both useful and unsound possibilities. All screening programmes do harm, and only few have more advantages than disadvantages at reasonable cost. Horizon scanning is needed to identify those few possibilities with more pros than cons. Attunement is needed between actors involved: scientists developing new high-throughput screening techniques and treatment, health care workers, patients and consumers and governmental agencies. The product of a process of attunement may be a quality mark as a norm for professional conduct, rather than legal measures, as the field is moving fast. As actors may have varying perspectives, a governance structure is needed to develop an agenda that is agreed upon by all or most actors involved. A standing committee might oversee the evaluation of benefits and disadvantages in an integrated approach, taking evidence, economics and ethics into account. A proactive role of governmental agencies is needed to facilitate agenda setting and attunement. Policy making has to be transparent and open to stakeholder engagement.

Personalized Medicine, 2008

Patterns of Prejudice, 2006

In 2003 Howard University announced its intention to create a databank of the DNA of African Americans, most of whom were patients in their medical centre. Proponents of the decision invoked the routine exclusion of African Americans from research that would give them access to the most up-to-date medical technologies and treatments. They argued that this databank would rectify such exclusions. Opponents argued that such a move tacitly affirmed the biological (genetic) basis of race that had long fuelled racism as well as that the potential costs were not worth the uncertain benefits. Howard University's controversial decision emerges from research in genomic medicine that has added new urgency to the question of the relationship between science and racism. This relationship is the topic of Wald's essay. Scientific disagreements over the relative usefulness of 'race' as a classification in genomic medical research have been obscured by charges of racism and political correctness. The question takes us to the assumptions of population genomics that inform the medical research, and Wald turns to the Human Genome Diversity Project, the new Genographics Project and the 2003 film Journey of Man to consider how racism typically inheres not in the intentions of researchers, but in the language, images and stories through which scientists, journalists and the public inevitably interpret information. Wald demonstrates the importance of understanding those stories as inseparable from scientific and medical research. Her central argument is that if we understand the power of the stories we can better understand the debates surrounding race and genomic medicine, which, in turn, can help us make better ethical and policy decisions and be useful in the practices of science and medicine.