Down's Syndrome Screening and Reproductive Politics


Book Description

Nominated for the Foundation of Sociology of Health and Illness Book Prize 2018 In the UK and beyond, Down’s syndrome screening has become a universal programme in prenatal care. But why does screening persist, particularly in light of research that highlights pregnant women’s ambivalent and problematic experiences with it? Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Thomas explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Down’s Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Down’s syndrome screening is ‘downgraded’ and subsequently stabilised as a ‘routine’ part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Down’s syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood. The book will appeal to academics, students, and professionals interested in medical sociology, medical anthropology, science and technology studies (STS), bioethics, genetics, and/or disability studies.




Screening for Down's Syndrome


Book Description

This important new publication summarises the recent exciting advances in screening for Down's syndrome. It addresses important clinical questions such as: risk assessment, who to screen, when to screen, which techniques to use, and the organisation of screening programmes nationally and internationally. An international and authoritative team of authors has been invited to assess the latest developments in this rapidly advancing area. The volume provides a critical and much needed evaluation of the potential and limitations of new and established techniques for screening for Down's syndrome. It will serve as an essential source of information for all those involved in pre-natal diagnosis and the provision of obstetric care.




OBSTETRICS


Book Description




Choosing Down Syndrome


Book Description

An argument that more people should have children with Down syndrome, written from a pro-choice, disability-positive perspective. The rate at which parents choose to terminate a pregnancy when prenatal tests indicate that the fetus has Down syndrome is between 60 and 90 percent. In Choosing Down Syndrome, Chris Kaposy offers a carefully reasoned ethical argument in favor of choosing to have such a child. Arguing from a pro-choice, disability-positive perspective, Kaposy makes the case that there is a common social bias against cognitive disability that influences decisions about prenatal testing and terminating pregnancies, and that more people should resist this bias by having children with Down syndrome. Drawing on accounts by parents of children with Down syndrome, and arguing for their objectivity, Kaposy finds that these parents see themselves and their families as having benefitted from having a child with Down syndrome. To counter those who might characterize these accounts as based on self-deception or expressing adaptive preference, Kaposy cites supporting evidence, including divorce rates and observational studies showing that families including children with Down syndrome typically function well. Himself the father of a child with Down syndrome, Kaposy argues that cognitive disability associated with Down syndrome does not lead to diminished well-being. He argues further that parental expectations are influenced by neoliberal ideologies that unduly focus on the supposed diminished economic potential of a person with Down syndrome. Kaposy does not advocate restricting access to abortion or prenatal testing for Down syndrome, and he does not argue that it is ethically mandatory in all cases to give birth to a child with Down syndrome. People should be free to make important decisions based on their values. Kaposy's argument shows that it may be consistent with their values to welcome a child with Down syndrome into the family.




Testing Women, Testing the Fetus


Book Description

Rich with the voices and stories of participants, these touching, firsthand accounts examine how women of diverse racial, ethnic, class and religious backgrounds perceive prenatal testing, the most prevalent and routinized of the new reproducing technologies. Based on the author's decade of research and her own personal experiences with amniocentesis, Testing Women, Testing the Fetus explores the "geneticization" of family life in all its complexity and diversity.







Assessing Genetic Risks


Book Description

Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.




Prenatal Diagnosis and Screening for Down Syndrome


Book Description

This book provides a concise yet comprehensive source of current information on Down syndrome. Research workers, scientists, medical graduates and paediatricians will find it an excellent source for reference and review. This book focuses on exciting areas of research on prenatal diagnosis - Down syndrome screening after assisted reproduction techniques, noninvasive techniques, genetic counselling and ethical issues. Whilst aimed primarily at research worker on Down syndrome, we hope that the appeal of this book will extend beyond the narrow confines of academic interest and be of interest to a wider audience, especially parents and relatives of Down syndrome patients.




UXD and UCD Approaches for Accessible Education


Book Description

It is widely agreed throughout the world that education and access to education are human rights. In order to accommodate the educational needs of people globally, technology will be required that supports inclusion and promotes equity for both learning processes and governance in educational institutions. In order to achieve this, technological resources must be designed to be accessible and usable for all individuals by implementing user-centered design (UCD) and user experience design (UXD) processes. UXD and UCD Approaches for Accessible Education is an academic research publication that explores thoughts and experiences on accessible and equitable education from perspectives on human-computer interaction, user research, and design thinking. It seeks to improve the understanding on how technology should be designed to truly contribute to and support accessibility and equity in education. Featuring a wide range of topics such as online courses, inclusive education, and virtual reality, this publication is essential for academicians, curriculum designers, researchers, instructional designers, educational software developers, IT consultants, policymakers, administrators, and students.




Mental Wellness in Adults with Down Syndrome


Book Description

This thoroughly updated second edition of MENTAL WELLNESS IN ADULTS WITH DOWN SYNDROME is upbeat and accessible in tone, yet encyclopedic in scope. The size of the book reflects both the breadth of the authors' knowledge--acquired as cofounders of the first medical clinic dedicated solely to the care of adults with Down syndrome--and the number of psychosocial issues and mental disorders that can affect people with Down syndrome. It's the go-to guide for parents, health practitioners, and caregivers who support teens and adults with Down syndrome. MENTAL WELLNESS emphasizes that understanding and appreciating both the strengths and challenges of people with Down syndrome is the key to promoting good mental health. It shows readers how to distinguish between bona fide mental health issues and common characteristics of Down syndrome--quirks or coping strategies. For example, although talking to oneself can be a sign of psychosis, many adults with Down syndrome use self-talk as an effective problem-solving strategy. The second edition includes new chapters on sensory issues (written by Dr. Katie Frank) and regression, expanded and now separate chapters on communication, concrete thinking, and visual memory, and an extensively updated chapter on Alzheimer's disease citing abundant new research. Other chapters cover a range of conditions and assessment and treatment options: What Is Normal? Self-Esteem & Self-Image Self-Talk Grooves & Flexibility Life-Span Issues Social Skills Mood & Anxiety Disorders Obsessive-Compulsive Disorder Psychotic Disorders Eating Refusal Challenging Behavior Self-Injurious Behavior Autism Tics, Tourette Syndrome & Stereotypies While it's not inevitable that people with Down syndrome will experience mental health problems, certain biological differences and environmental stressors can create greater susceptibility. Assessment and treatment options are detailed for each condition. With this guide, caregivers will be able to foster good mental health and troubleshoot challenging mental health issues.