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Abortion, Induced↗
PubMed2004

Privacy and policy for genetic research.

I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research: (1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research.

Access to Information↗
PubMed1993

The impact of the Patient Self-Determination Act's requirement that states describe law concerning patients' rights.

As of December 1991, the Patient Self-Determination Act (PSDA) mandated that health care institutions which receive funding from Medicare or Medicaid provide written information about persons' rights to participate in medical decision-making and formulate advance directives. The PSDA required each state "...acting through a State agency, association, or other private nonprofit entity develop a written description of the law of the State (whether statutory or as recognized by the courts of the State) concerning advance directives that would be distributed by providers or organizations under the requirements of [the Act]." This mandate allowed each state considerable flexibility in its approach to the process of writing the state description and to its content. In 1990, the American Bar Association's Commission on Legal Problems of the Elderly prepared and distributed the Patient Self Determination Act: State Law Guide to assist each state in preparing its written description of state law. In follow-up to the distribution of this guide, we conducted a telephone survey with a representative from each state (including the District of Columbia) about each state's process for writing the state law description. This paper presents an evaluation of the process used by the states and of the documents they produced.

Advance Directives↗