Medical Genetics Casebook

The Direction of Medical Ethics The direction bioethics, and specifically medical ethics, will take in the next few years will be crucial. It is an emerging specialty that has attempted a great deal, that has many differing agendas, and that has its own identity crisis. Is it a subspecialty of clinical medicine? Is it a medical reform movement? Is it a consumer pro­ tection movement? Is it a branch of professional ethics? Is it a ra­ tionale for legal decisions and agency regulations? Is it something physicians and ethical theorists do constructively together? Or is it a morally concentrated attack on high technology, with the prac­ titioners of scientific medicine and the medical ethicists in an adversarial role? Is it a conservative endeavor, exhibiting a Frankenstein syn­ drome in Medical Genetics ("this time, they have gone too far"), or a Clockwork Orange syndrome in Psychotherapy ("we have met­ hods to make you talk-walk-cry-kill")? Or does it suffer the afflic­ tion of overdependency on the informal fallacy of the Slippery Slope ("one step down this hill and we will never be able to stop") that remains an informal fallacy no matter how frequently it's used? Is it a restricted endeavor of analytic philosophy: what is the meaning of "disease," how is "justice" used in the allocation of medical resources, what constitutes "informed" or "consent?" Is it applied ethics, leading in clinical practice to some recommenda­ tion for therapeutic or preventive action? This incomplete list of questions indicates just how complex,

Contenu

1 (Cases 1-7) Introduction to the Problem:Is an Amniocentesis Program Good Medicine or Social Engineering?.- Curative and Preventive Labels in Medicine.- The Unfragmented Patient.- Cost/Benefit Uses and Abuses.- We Can Never Do Only One Thing: The Ecological Model.- Attitudes Toward Pain and Suffering.- 2 (Cases 8-23) Working with Information.- Lack of Documentation, Verified Diagnosis, or Autopsy.- One Syndrome or Separate Problems.- Catch-All Explanations.- New Syndromes.- 3 (Cases 24-51) Denial and Reality Testing.- How Much Patient Denial Can Be Accepted?.- Anxiety Induction and Lowering.- Perceptions of Risk.- Overmedicalization or Good Medical Practice?.- 4 (Cases 52-74) Self-Image.- The Worth of the Individual.- Carrier Status.- Affected Parents.- Affected Offspring.- Parents' Sense of Responsibility for the Defect.- 5 (Cases 75-92) Experimental Research and Procedures.- Thalassemia Research.- Other Applications of Fetoscopy.- HLA Linkage, Secretor Linkage Research.- Blood Sampling Studies, Amniotic Fluid Sampling Studies, and Psychological Studies.- Future Effects of Environmental Contaminants.- 6 (Cases 93-118) Selective Abortion:Range of Choices and Time Frames.- Counseling Decision After Physician Referral.- Prenatal Testing Decisions.- Abortion Decided Affirmatively or Negatively Before Testing.- Abortion Decided Affirmatively or Negatively with Test Results.- Followup Support for Abortion Decisions.- 7 (Cases 119-130) Social and Individual Interest Conflicts.- Sex Determination and Selection.- Excuse for Aborting Unwanted Pregnancies.- Referral and Feedback.- The Physician in the Dual Role of Filling Social Interests and Individual Interests.- 8 Pragmatics as an Ethical System.- Adaptation and the Pragmatic Criterion.- The Traditional Trio in Medical Ethics.- Pragmatics.- Value of a Systems Model.- The Nature and Justification of Intervention.- The Forgotten Human Condition.- The Worth of Human Beings.- Future Issues in Medical Ethics.- Medicine as Mythology.- Index of Case Studies.