Spring 2016 Syllabus
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Nontherapeutic Growth Attenuation, Parental Medical Decision Making, and the Profoundly Developmentally Disabled Child’S Right to Bodily Integrity
KOLL.DOCX (DO NOT DELETE) 12/17/2009 2:48 PM GROWTH, INTERRUPTED: NONTHERAPEUTIC GROWTH ATTENUATION, PARENTAL MEDICAL DECISION MAKING, AND THE PROFOUNDLY DEVELOPMENTALLY DISABLED CHILD’S RIGHT TO BODILY INTEGRITY MARY KOLL* Should parents of a profoundly developmentally disabled child be permitted to permanently terminate their child’s healthy bodily de- velopment in order to arguably increase the child’s quality of life? While such a procedure may sound like something out of science fic- tion, a highly publicized medical journal article released in 2006 de- scribed the case of Ashley X, a profoundly developmentally disabled child who received high-dose hormone treatment—along with a mas- tectomy and a hysterectomy—to permanently stunt her growth and al- legedly increase her quality of life. Though the authors of the article presented this type of nontherapeutic growth attenuation as a viable medical option for profoundly disabled children, critics from all over the world characterized the procedure—which came to be known as the “Ashley Treatment”—as a grave and unacceptable human rights violation. Nonetheless, the Ashley Treatment has also been met with support from some, most notably the parents of profoundly disabled children, many of whom have expressed a desire for their own child- ren to undergo similar procedures. This Note explores the question of whether parents should be permitted to choose such interventions on behalf of a child from the perspective of the child’s rights, specifi- cally, the child’s fundamental right to bodily integrity. Following a brief description of the case of Ashley X and the ensuing controversy, the author describes the right to bodily integrity, including its origins, its modern constitutional status, and its application to profoundly dis- abled children. -
Thesis Statement
PERSONAL ASSISTANTS AND COLLABORATIVE DECISION MAKING: PROMOTING A BETTER BALANCE OF AUTONOMY AND WELL-BEING FOR ADULTS WITH MODERATE, MILD, AND BORDERLINE MENTAL RETARDATION by Sarah M. Pope B.S., University of New Hampshire, 2000 J.D., University of Pittsburgh, 2007 Submitted to the Graduate Faculty of The Center for Bioethics and Health Law in partial fulfillment of the requirements for the degree of Master of Arts University of Pittsburgh 2007 UNIVERSITY OF PITTSBURGH THE CENTER FOR BIOETHICS AND HEALTH LAW This thesis was presented by Sarah M. Pope It was defended on April 13, 2007 and approved by Elizabeth Chaitin, DHCE, Center for Bioethics and Health Law James Flannery, JD, School of Law Thesis Advisor: Alan Meisel, JD, Center for Bioethics and Health Law, School of Law ii Copyright © by Sarah M. Pope 2007 iii PERSONAL ASSISTANTS AND COLLABORATIVE DECISION MAKING: PROMOTING A BETTER BALANCE OF AUTONOMY AND WELL-BEING FOR ADULTS WITH MODERATE, MILD, AND BORDERLINE MENTAL RETARDATION Sarah M. Pope, J.D., M.A. University of Pittsburgh, 2007 Autonomy is a core value of American tradition and is promoted in health care through the doctrine of informed consent. The notion underlying informed consent is that patients should have the right to decide, and are often in the best position to know, what will enhance their own well-being. Although this ethic has been extended to incompetent patients, by employing surrogate decision making, providing surrogate decision makers for adults with moderate, mild, and borderline mental retardation (“M-BMR”), who could potentially make their own decisions if adequate supports were offered, unreasonably restricts the autonomy of such individuals and often results in disregard for the patients’ human dignity. -
The Frailty of Disability Rights
ESSAY THE FRAILTY OF DISABILITY RIGHTS JASMINE E. HARRIS† INTRODUCTION .............................................................................. 30 I. THE CASE OF COVID-19 & THE ROLLBACK OF DISABILITY RIGHTS ..................................................................................... 33 A. Access to COVID-19 Related Treatment ........................................... 34 B. Access to a Free Appropriate [and Remote] Public Education .............. 38 II. THE INSTABILITY OF DISABILITY RIGHTS .................................. 45 A. Morality, Medicine, and Bad Differences .......................................... 45 B. Stealth Advocacy and the Absence of Public Contestation .................... 46 C. The Difficulty of Defning Disability ................................................. 49 III. BEYOND COVID-19 ..................................................................... 52 A. Identifying the Next Waves of Disability Discrimination ..................... 53 B. Reimagining Legal & Policy Interventions ........................................ 57 1. Olmstead Enforcement ......................................................... 58 2. Cleburne and Rational Basis Review ..................................... 59 3. Disability as National Security ............................................. 61 CONCLUSION .................................................................................. 63 † Professor of Law, University of California—Davis; J.D., Yale Law School; A.B., Dartmouth College. This Essay has benefitted from thoughtful -
The Strange Case of Ashley X
Forever Small: The Strange Case of Ashley X EVA FEDER KITTAY I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child ‘‘forever small.’’ The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physi- cians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay ‘‘forever small’’ and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daugh- ter with severe cognitive impairments. PRELUDE THE CASE In 2002, the parents of a six-year-old girl with a condition that will require physical care throughout her life, and who had begun to exhibit signs of pre- cocious puberty, requested, and were granted, permission to have high doses of estrogen administered to induce the premature closing of the long-bone epiphyses, thus maintaining the girl’s height at 4’5’’. The intention was to facilitate her care by keeping her small. To reduce the uterine bleeding that accompanies the procedure, as well as the risk of uterine cancer, she underwent a hysterectomy prior to the estrogen treatment. -
Clinical Research – a Journey Toward Diversity
September Accelerated Cure Project for MS 2017 Accelerating research towards a cure for multiple sclerosis Clinical Research – A Journey Toward Diversity Clinical trials are an essential part of the drug development process. Regulatory agencies such the Food and Drug Administration (FDA) use information gathered from clinical trials to decide if medicines are safe and effective. It is important to have ethnic diversity in clinical trials to better understand diseases, and the full impact of certain drugs. Different ethnicities can have unique responses to the same disease. Studies have shown that MS can be especially active in African Americans. The effectiveness of many drugs can also vary depending on the patient’s ethnicity, lifestyle, culture and genetic makeup. For example, about 50 percent of Asian patients and 75 percent of Pacific Islanders lack the enzymes required to activate Plavix (a blood thinner). Certain classes of hypertension drugs have recently been found to be less effective in African American patients. According to the National Institutes of Health (NIH), minorities account for fewer than 10 percent of patients enrolled in clinical trials. African American men are twice as likely as Caucasian men to die from prostate cancer, yet they represent just 4 percent of prostate cancer clinical trial participants. Suicide is one of the top three causes of death among Asian American women under 45 years of age, yet they represent just 1 percent of major depressive disorder clinical trial participants. And while the prevalence of diabetes among Mexican Americans and Puerto Ricans is more than double that of Caucasians, those groups combined represent just 4 percent of diabetes trial participants. -
The Ashley Treatment: the Current Legal Framework Protects the Wrong Rights
Minnesota Journal of Law, Science & Technology Volume 10 Issue 2 Article 12 2009 The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights Jillian Kornblatt Follow this and additional works at: https://scholarship.law.umn.edu/mjlst Recommended Citation Jillian Kornblatt, The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights, 10 MINN. J.L. SCI. & TECH. 773 (2009). Available at: https://scholarship.law.umn.edu/mjlst/vol10/iss2/12 The Minnesota Journal of Law, Science & Technology is published by the University of Minnesota Libraries Publishing. KORNBLATT J. The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights. MINN. J.L. SCI. & TECH. 2009;10(2): 773-800. Note The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights Jillian Kornblatt* In 2006 two Seattle doctors performed several procedures to attenuate the growth of a profoundly neurologically and cognitively disabled six-year-old girl. When the doctors described the treatment in a medical journal, the story gained worldwide publicity and quickly became the subject of a highly contentious and emotionally charged controversy. As a result, a federally-sanctioned disability rights protection organization conducted an investigation and concluded that the treatment should not have been performed without a court order and that doing so violated the girl’s constitutional rights. Part I of this Note considers the legal framework applied to the treatment decision and how the framework would apply to other children whose parents requested the treatment. Part II then analyzes whether this framework adequately protects the best interests and constitutional rights of potential candidates for this treatment and their parents. -
Fact Sheet: Women with Disabilities and Legal Issues
TASC is sponsored by the Administration on Developmental Disabilities (ADD), the Center for Mental Health Services (CMHS), the Rehabilitation Services Administration (RSA), the Social Security Administration (SSA), and the Health Resources Services Administration (HRSA). TASC is a division of the National Disability Rights Network (NDRN). Fact Sheet: Women with Disabilities and Legal Issues Concerning Reproductive Health August, 2011 Prepared by: National Health Law Program Jina Dhillon and Celine Lefebvre1 with a grant from the Training and Advocacy Support Center (TASC) Introduction This fact sheet describes significant reproductive health-related legal issues that women with disabilities may face. Women with disabilities are particularly susceptible to discriminatory standards of care, coercion and misinformation about their reproductive autonomy. Courts have issued decisions involving the capacity to consent to sterilization, abortion and similar procedures, or the ability of a guardian to make reproductive health determinations in the best interests of the individual. This fact sheet provides an overview of case law in this area as well as a brief discussion of other issues identified by legal scholars as important areas for advocacy. Reproductive Health Issues Sterilization People with mental and physical disabilities have often been subjected to forced sterilization. The notion that these women and men are unable to make meaningful decisions about their reproductive capacity often leads caretakers, guardians, and the courts to consider sterilization as the best option for them. Case law regarding sterilization stems from the United States Supreme Court’s 1927 decision in Buck v. Bell, in which the U.S. Supreme Court upheld a Virginia statute that instituted compulsory sterilization of individuals with mental disabilities.2 Since then, many cases have addressed the issue of sterilization of women with disabilities. -
An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities
Syracuse University SURFACE Syracuse University Honors Program Capstone Syracuse University Honors Program Capstone Projects Projects Spring 5-1-2015 An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities Katelyn Marie Edel Syracuse University Follow this and additional works at: https://surface.syr.edu/honors_capstone Part of the Ethics and Political Philosophy Commons, and the Other Neuroscience and Neurobiology Commons Recommended Citation Edel, Katelyn Marie, "An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities" (2015). Syracuse University Honors Program Capstone Projects. 847. https://surface.syr.edu/honors_capstone/847 This Honors Capstone Project is brought to you for free and open access by the Syracuse University Honors Program Capstone Projects at SURFACE. It has been accepted for inclusion in Syracuse University Honors Program Capstone Projects by an authorized administrator of SURFACE. For more information, please contact [email protected]. An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities A Capstone Project Submitted in Partial Fulfillment of the Requirements of the Renée Crown University Honors Program at Syracuse University Katelyn Marie Edel Candidate for Bachelor of Arts and Renée Crown University Honors May 2015 Honors Capstone Project in Neuroscience Capstone Project Advisor: ___________________________ William Peace, Professor in the Renée Crown University Honors Program Capstone Project Reader: ____________________________ -
Eunice Rivers (Tuskegee Nurse)9,10 of Tuskegee Study
Teaching Ethics through Role-Play: Comparing Public Health Research Conducted at the Willowbrook State School with the Infamous Tuskegee Study Maya C. Rose, Jessica E. Brodsky, Elizabeth S. Che, Dvora Zomberg, & Patricia J. Brooks College of Staten Island and The Graduate Center, CUNY Background Why Revisit Willowbrook and Tuskegee Group Differences in Awareness Role-play • In their introduction to research ethics, college students often learn about the in Introductory Psychology Classes? Awareness of Tuskegee Awareness of Willowbrook • Promotes discussion of research ethics infamous Tuskegee study, where physicians left syphilis untreated in Black Pre Post Pre Post men from 1932 to 1972 in order to study the progression of the disease.1 • Encourages students to confront racism and ableism in American society • The hepatitis studies that took place at the Willowbrook State School from • Allows students to draw connections to textbook coverage of Tuskegee Yes (n = 130) 31 (23.8%) 129 (99.2%) 46 (35.4%) 128 (98.5%) 1956 to 1970 are less often discussed. At Willowbrook, intellectually disabled 4 No (n = 73) 12 (16.4%) 59 (80.8%) 27 (40.0%) 59 (80.8%) children were deliberately infected with hepatitis via food laced with fecal Student Role-Play (Part 3 of Homework) material for purposes of biomedical research. Total (N = 203) 43 (21.2%) 188 (92.6%) 73 (36.0%) 187 (92.1%) Tuskegee Study Participants (Last 87 and Ernest Hendon8) • Both studies exemplify the gross violations of human rights that were once "In 1932, I was poor 24-year-old sharecropper that had some “bad blood”. I had never been to the doctor and me like The majority of students (64%) reported that they took part in the role-play. -
B.R.I.D.G.E.S. Forecast
B.R.I.D.G.E.S. Building Relationships Intentionally to Develop Growth and Exemplary Services {August 2021} FORECAST WELCOME! AUGUST August 18 is “Never Give Up Day”. This day is about a mindset of determination to help us get through even the hardest of challenges. It is about motivating others and inspiring ourselves. Of course, we should try to keep this mindset all year round, but this day can help us get us back in the game and refresh us to keep going. To quote Thomas Edison, “I have not failed, I’ve just found 10,000 ways that won’t work”. To help us to never give up there are a few points to try and keep us going. 1. Adopt a “I won’t quit” mindset. 2. Remember and repeat your Why. 3. Find a different how and try a new technique or strategy. 4. Use failure as a lesson August Monthly observances: • National Black Business Month • National Back to School Month • American Adventures Month • American Artist Appreciation Month • Happiness Happens Month Please review the latest DODD health and welfare alerts at https://dodd.ohio.gov/wps/portal/gov/dodd/health-and-welfare There is some wonderful helpful information regarding summer safety. Here are some other summer safety tip ideas. Hydrate, Hydrate, Hydrate If you feel thirsty, you are already dehydrated Carry water with you and drink frequently, use a reusable water bottle Wear sunscreen when outside and reapply frequently Wear Sunglasses and hats Upcoming Rule Changes: July 1, 2021 Rule: 5123-10-05 (Early Intervention Program - Developmental Specialist Certification) September 1, 2021 Rules: 5123-2-08 (Provider Certification - Agency Providers) 5123-2-09 (Provider Certification - Independent Providers) https://dodd.ohio.gov/wps/portal/gov/dodd/forms-and-rules/rules-under- development/effective+dates+for+new+rules KUDOS The KUDOS for this month is going to be a little different. -
Finding Aid by Catherine N
A Guide to the Assemblywomen Elizabeth A. Connelly Papers, 1974-2002 Archives & Special Collections College of Staten Island Library, CUNY 2800 Victory Blvd., 1L-216 Staten Island, NY 10314 © 2003 The College of Staten Island, CUNY Finding Aid by Catherine N. Carson, Mary Hedge & Jeffrey Kroessler Overview of the Collection Collection No. : PM-2 Title: Elizabeth A. Connelly Papers Creator: Elizabeth A. Connelly Dates: 1974-2002 Extent: 36 Linear Feet Abstract: Assemblywoman Elizabeth A. Connelly was elected to the New York State Assembly in 1973 as the first woman from Staten Island elected to public office. Connelly was appointed Chairwoman of the Committee on Mental Health, Mental Retardation/Developmental Disabilities and Alcoholism and Substance Abuse in 1977, becoming the first woman Democrat ever to chair a standing Assembly Committee. Connelly was also interested in environmental issues and her activities in closing the Fresh Kills Landfill and in protecting the Staten Island environment. Connelly was appointed to chair the Committee on Standing Committees in 1993 and was appointed Speaker Pro Tempore in 1995, the highest leadership position ever held by a woman in the New York State Assembly. Connelly retired in 2000 as the longest serving woman in the history of the New York State Legislature. The collection contains correspondence, newsletters, Finding Aid for the Assemblywoman Elizabeth A. Connelly Papers reports, press releases, news clippings, public hearing testimony, photographs and awards. Administrative Information Preferred Citation The Assemblywoman Elizabeth A. Connelly Papers, Archives & Special Collections, Department of the Library, College of Staten Island, CUNY, Staten Island, New York. Acquisition Assemblywoman Elizabeth A. -
Disability Timeline - Advocacy
Disability Timeline - Advocacy 1841 Dorothea Dix begins to advocate for people with disabilities held in prisons and ACT INST Pelka, ABC-Clio Companion to the poorhouses. PSY USA Disability Rights Movement. WOM 1854 New England Gallaudet Association of the Deaf founded Montpelier, Vermont. ACT DF Pelka, ABC-Clio Companion to the ORG USA Disability Rights Movement. 1878 Modified Braille demonstrated by Joel W. Smith to American Association of ACT BLI Pelka, ABC-Clio Companion to the Instructors of the Blind. Rejecting it, association instead continues to support New EDU ORG Disability Rights Movement. York Point, even though blind readers complain it is more difficult to read and write. USA "War of the Dots" ensues, with blind advocates mostly favoring Modified Braille, while sighted teachers and administrators, who control transcription funds, back New York Point. 1880 National Convention of Deaf Mutes in Cincinnati, Ohio. Gathering ultimately leads ACT DF Pelka, ABC-Clio Companion to the to founding of National Association of the Deaf (NAD), which will resist oralism ORG USA Disability Rights Movement. and suppression of American Sign Language. 1901 National Fraternal Society of the Deaf founded by graduates of Michigan School ACT DF Pelka, ABC-Clio Companion to the for the Deaf. As only fraternal life insurance company run by Deaf people, advocates L&P ORG Disability Rights Movement. during first half of 20th century for Deaf people's rights to buy insurance and get USA driver's licenses. 1908 Clifford Beers, A Mind That Found Itself, exposes abusive conditions in public and ACT INST Pelka, ABC-Clio Companion to the private mental hospitals.