Bioethical issues

Introduction

What characterises the field of bioethics is its concern with fundamental questions of health and illness; life and death; autonomy, dignity, personhood, and humanity; the relationship of medicine to nature; the relationship of health to well-being. Both bioethics and the disability rights movement have appeared only in the past half-century, and each has emerged in reaction to a dominant paradigm in the medical and helping professions (Longmore, 5). Recognition of bioethical issues first arose when the public learned that physicians and scientists all over the world in the first half of the twentieth century engaged in widespread abuse of many classes of vulnerable citizens by failing to obtain their consent to serve as subjects in dangerous medical research. Prisoners, concentration camp inmates, residents of institutions for the psychiatrically and cognitively disabled, and African American sharecroppers had all been victims of government and professional research interests. Discovery of these abuses spurred demands for regulation, reform, and new oversight of governmental and professional behaviour (Albrecht, 977).

If disability and bioethics began with similar concerns, they have also broadened their focus in similar ways. As disability scholarship and activism have moved from demands for individual control and self-determination to calls for sweeping societal change, bioethics has recognised that the complex life-anddeath decisions made by individuals and families cannot remain its only concern. Recent debate also focuses on the implications of life-creating and life-changing technologies, on questions of what constitutes a just distribution of resources for medical care, and on which life situations should properly come under the purview of medicine (Bickenbach, 123).

But if bioethics resembles the disability rights movement in its commitment to patient autonomy, its skepticism about professional authority and paternalism, and its support of consumer rights, it has never shared its understanding of disability or its valuation of lives with disabilities. The dominant bioethics voices have argued that human life has to be respected and valued, but not necessarily at any cost or in any state of impairment. Now that human mastery over nature permits lives to be sustained despite significant illnesses and disabilities, it is incumbent on individuals and societies to set limits on which medicine and technology should be used for these purposes. Instead of the medical question, “Could this life be saved?” bioethics invites the question, “Should this life be saved?” Bioethics challenges the disability community by asking whether it is appropriate to use medical technology to sustain the life of someone who would be left with a severe disability (Asch, 14 ).

Health, Normality, Disability, and Quality of Life

Those who embrace either the social or the minority group model of disability contend that prevailing bioethics understandings of impairment rest on two erroneous assumptions. First, the life of someone with a chronic illness or disability is permanently disrupted, in the way one's life could be temporarily disrupted by the flu or a back spasm. Second, if a disabled person experiences isolation, powerlessness, poverty, unemployment, or low social status, these are inevitable consequences of biological limitation (Asch, 16 ...