Where Bioethics Went Wrong

Abstract

Only a few decades ago, bioethics was born amongst a small group of people from different disciplines who wrote and lectured about problems in which they shared an interest. In only a short time, a common interest became an independent subject – bioethics. Bioethics quickly acquired an intellectual program – one might even say orthodoxy – whose essentials remain virtually unchanged. As Renée Fox writes, “from the outset, the conceptual framework of bioethics has accorded paramount status to the value-complex of individualism, underscoring the principles of individual rights, autonomy, self-determination, and their legal expression in the jurisprudential notion of privacy.”

Astonishingly, in only a few decades bioethicists have persuaded legislatures, courts, and administrative agencies to put many elements of their autonomy principle into law. A few examples: Every time doctors treat a patient, they must secure the patient’s informed consent. Every time patients first encounter a doctor or hospital, they must be given information about their rights and risks under the privacy rules of HIPAA. Every time patients enter a hospital or nursing home, they must be told about advance directives. Every time patients cannot make their own decisions, decisions are made for them in the context of legal rules about living wills, durable powers of attorney, agents, and substituted judgment. Every time researchers want to study people, they must get a license from one of the thousands of agencies (IRBs) that review research for its compliance with requirements for informed consent, privacy, conflicts of interest, research design, and increasingly more. The list could go on, and there are numerous proposals for extending it.

Amidst all this activity, one question now calls out for answers – does all this work? Does the law of bioethics accomplish its purposes? Do its benefits outweigh its costs? Much of that law has now been in place long enough to have permitted scholars to study the law’s workings empirically, often quite extensively. So the raw material for this evaluation is available, sometimes abundantly. A few attempts to evaluate particular programs have been undertaken, but no serious attempt has been made to look globally at the ambitious agenda bioethics has put into law. In this essay, I sketch a way in which that attempt might be made, speculate about what that attempt is likely to find, and propose more fruitful paths for bioethical policy to pursue.

Keywords: Bioethics, Autonomy, Informed Consent, Patient Rights, Living Wills

JEL Classification: K00, K32