| Time | Session | Presenters |
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| 8:00 AM | Registration |
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| 8:30 AM | Introductions and Welcome |
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| 8:40 AM | Session one |
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Becoming a Parent: |
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Eugenics History and the Culture Wars: Sterilization and Reproductive Rights |
Paul A. Lombardo Professor of Law, Georgia State University, Center for Law, Health and Society |
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| 2007 marked the 100th Anniversary of eugenic sterilization in the United States. The first state law authorizing state mandated sexual surgery was enacted in Indiana in 1907 and in the following thirty years another thirty one states passed similar laws, all based on the theory of eugenics, all founded on the hope that eliminating childbirth among the “unfit”—the poor, the disabled, and criminals-- would eliminate crime and poverty, lower taxes, and lead to future generations of “well born” children. This proposition was endorsed by the United States Supreme Court in 1927 in the case of Buck v. Bell, notorious for the Justice O.W. Holmes opinion that declared: Three generations of imbeciles are enough.” This presentation will briefly survey the history of American eugenics, and recount the public debates in Indiana and Georgia concerning commemorative legislation marking the centennial year just passed. It will conclude with reflections on the relevance of eugenic history today, as challenges to the principle of reproductive liberty make their way through the current Supreme Court, and as the word “eugenics” is being redefined for use as a political epithet in the ongoing culture wars. |
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Rethinking the Meaning of Health in an Era of Reproductive Technologies
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Judith Daar Professor of Law, Whittier Law School Clinical Professor of Medicine, University of California Irvine College of Medicine |
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| Recent discoveries in the world of reproductive medicine allow prospective parents to peer into the genetic future of their children from the earliest moments of life. Armed with this information, parents can choose whether or not to continue along the procreative path by selecting or discarding embryos on the basis of their genetic composition. In making this decision, a parent’s view of health and disability figure prominently, sometimes yielding outcomes that cause a larger community to rethink the concept of health. This presentation will explore the use of reproductive technologies to detect the genetic health of early embryos prior to implantation. Genetic selection for medical reasons will be explored from three rationales: 1) to ensure the health of the embryo, 2) to ensure the health of an existing person, and 3) to ensure the continuity of a genetic trait within the family structure. |
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| 10:15 AM | Break |
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| 10:30 AM | Session Two |
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Becoming a Parent: |
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Disability and the Duties of Potential Parents |
Janet Malek Assistant Professor, Department of Medical Humanities, Brody School of Medicine, East Carolina University |
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| Advancing reproductive and genetic technologies are expanding our control over human reproduction, making us increasingly able to select - for or against - the particular traits of our offspring. The considerable power to determine the characteristics of our future children has the potential to be abused. Nonetheless, there are at least some reasons to believe not only that parents should have the freedom to use these technologies, but that in some cases they may be morally required to do so. This presentation considers some possible arguments that support this position. It then looks closely at one family of objections that could be raised to these arguments - the disability critique. Several different concerns are identified and applied to the claim that potential parents may have a duty to use technology to determine the traits of their future children. The existence of such a duty could express disvalue for the lives of people living with disability or affect the way that potential parents view their future children. If using technology to avoid disability in future children were a parental obligation, society at large could become less tolerant of disability and, as a result, less accommodating of those living with disability. Finally, broad recognition of such a duty has the potential to exacerbate existing inequalities and further disadvantage the least well off. These concerns are evaluated and their implications are discussed. | ||
Ensuring Equal Access to Reproductive Health Care for Women with Disabilities |
Elizabeth A. Pendo Visiting Professor of Law (2007-08) Center for Health Law Studies, Saint Louis University School of Law |
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| Despite the passage of the Americans with Disabilities Act in 1990, inaccessible medical equipment still compromises the health and well-being of people with disabilities, and women with mobility disabilities in particular. Early writing after the passage of the ADA noted equipment access as a problem, but predicted or appeared to assume that the ADA’s requirement of removal of architectural and access barriers where readily achievable would quickly remedy the problem. However, although Titles II and II of the Americans with Disabilities Act do require that health care institutions and offices be accessible, few actually are: over 15 years after passage of the ADA, too many women with mobility impairments cannot get on examination tables, cannot be weighed, and cannot use mammography equipment. This presentation will examine the extent and nature of these barriers to basic women’s health care for women with disabilities, as well as two possible solutions – increased enforcement activity by the Department of Justice, and passage of the proposed Promoting Wellness Act of 2007, which would establish accessibility standards for medical and diagnostic equipment. | ||
| 12:00 PM | Lunch | |
| 1:00 PM | Session Three |
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Valuing Families |
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Parenting, Disability, and Meeting Children’s Needs |
Adrienne Asch Director, Center for Ethics and Edward and Robin Milstein Professor of Bioethics, Wurzweiler School of Social Work, Yeshiva University Professor of Epidemiology and Population Health, Albert Einstein College of Medicine |
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| In the last twenty years, there has been substantial feminist and progressive literature on motherhood and fatherhood, but very rarely does that literature include discussions of parents with disabilities. In this presentation I discuss presumptions against people with disabilities as parents, review literature on parents with disabilities, and consider some of the ethical issues posed when some people with disabilities raise children. | ||
Accommodating Families: Disability Policy and Law in Family Support and Stabilization Services |
Susan Stefan Senior Staff Attorney, Center for Public Representation |
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| Years ago, when children were born with mental disabilities, or began to display severe behavioral problems at an early age, they were institutionalized; when mothers had serious psychiatric disabilities and were known to the mental health or social service system, their children were taken away from them at birth. Since the 1980s, public policy, research literature, and parent and child advocates have supported the importance of providing services necessary to keep families together when one member of the family has a mental disability. Nevertheless, both entitlement systems and jurisprudence structurally undermine these efforts. Despite the fact that the entire family is affected whenever any one member has a serious mental disability, sharp distinctions are made, as a matter of law, policy, and social understanding, depending on whether the family has a child with a disability or a parent with a disability. This article describes current efforts to keep families together when one member has a psychiatric or behavioral disability, and discusses how different approaches in policy and law might make these efforts more successful. | ||
| 2:30 PM | Break | |
| 3:00 PM | Session Four |
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Valuing Families |
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Mutants and Wild Types: |
Clare Dunsford Associate Dean, College of Arts & Sciences, Boston College |
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| A genetic diagnosis for a child’s disability brings with it a host of other issues for the parent and the extended family. Speaking as the mother of a boy with fragile X syndrome, Dunsford describes the emotional and practical implications of being a carrier of a genetic premutation as well as raising a child with the full mutation. Reading from her memoir, Spelling Love with an X, she relates in personal terms the anguish and complexity of a new identity. The increasing use of our genes to define our identities has the potential to foster notions of human “perfection” that are both impossible and dangerous. In her book and in her presentation Dunsford asserts the inherent “perfection” of a boy who has the wisdom to say “I want to be just who I am.” | ||
| 3:45 PM | Concluding Remarks |
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| 4:00 PM | Conference Concludes |
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For more information about the Center for Health Law Studies, |
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