American health policy today faces dual problems of too little coverage at too high a cost. The mix of private and public financing leaves about one seventh of the population without any insurance coverage. At the same time, the coverage Americans do have costs an ever-larger share of our country’s productive capacity. The U.S. pays well above what other countries pay and what many people, health plans, businesses, and governments want to pay. This “paradox of excess and deprivation” results from the incremental approach the U.S. has taken to promoting incompatible policy goals of increasing health insurance coverage and medical quality while trying to control costs, without squarely confronting tradeoffs. This essay examines the record of incremental developments and draws lessons for current efforts at reform.

Although the details of the Clinton health care plan have yet to emerge from the continuing policy debate over the shape and size of the administration’s reform measures, one thing has become increasingly clear. Several recent developments in antitrust law will have important implications for what the plan will permit and how it will work.

By all accounts, the broad outline of the administration’s plan revolves around the development of large and powerful consumer groups who, with the help of sophisticated, government-established intermediaries, will presumably purchase health care wisely and well. This alliance of massed consumer purchasing and government information-gathering will, it is hoped, produce a health care market more in competitive balance than the current version, which is widely regarded as dominated by powerful providers who dictate terms to small, uninformed buying groups.

Physicians and institutional providers face expanding liability exposure today, in spite of state tort reform legislation and public awareness of the costs of malpractice for providers. Standards of practice are evolving rapidly; new medical technologies are being introduced at a rapid rate; information is proliferating as to treatment efficacy, patient risk, and diseases generally. Tort standards mirror this change. As medical standards of care evolve, they provide a benchmark against which to measure provider failure. The liability exposure of physicians is affected by (1) the generation of data, including outcomes data usable to profile physician practice, and statistical data that allows for predictions as to treatment efficacy, and patient prognosis; (2) obligations to inform patients and third parties of risk created by contagious disease and other sources of harm; (3) obligations of physicians to disclose risks that the provider creates for the patient; (4) obligations to disclose conflicts of interest arising out of the practice setting; and (5) duties arising from new epidemiological knowledge.

As the millennium approaches, the United States is on the verge of major health care reform. While swallowing scarce national resources, our health care system produces unenviable results and major inconsistencies. In 1992, $838.5 billion were spent on health care, biting more than 14 percent out of our gross national product. From 35 to 37 million Americans, or approximately 14 percent of the populationn, are uninsured. Our health care system is inherently inconsistent: We have the highest birthweight-specific survival rate of any country in the world, yet we rank 19th worldwide in infant mortality rate, i.e., state-of-the-art medical technology allows us to save a 500-gram infant, yet the mother of that infant may not have had access to basic, minimal prenatal care.

Gender violence is a major yet often underrecognized obstacle to reproductive choice. In both the abortion rights movement in the United States and the reproductive health movement globally, the “enemy” of self-determination and choice is usually seen as imposing from the top down. In the North, it is the government—through the courts, the legislature, and bureaucratic rulemaking—that threatens to “take away” women’s reproductive autonomy. The image is one of the public sphere invading that which is private—of the state interfering with a woman’s right to control her own body.

Calls for the inclusion of women in clinical trials raise the obvious question: why have sponsors excluded them? The answer most often given is one tragically evocative word: Thalidomide. The tragedies of the children born with seal limbs because their mothers took this over-the-counter sleeping pill and cure for morning sickness showed that, contrary to previous perceptions, the placenta could not be depended upon to filter out toxins before they reached the fetus. The specter of birth defects spawned sponsors’ fears of a variety of catastrophes which contributed to closing the doors of clinical trials for women.

This paper will not argue that the possibility of birth defects arising from the ingestion of an experimental drug does not exist. Sadly, scientists do not yet have the ability to predict which drugs will cause birth defects. Rather, it will argue that case law does not provide a basis for sponsor liability when a woman gives informed consent and the regulations governing clinical trials are followed.

“There's glory for you!”

“I don't know what you mean by ‘glory,’ ” Alice said.

Humpty Dumpty smiled contemptuously. “Of course, you dont—till I tell you. I meant ‘there's a nice knock-down argument.’”

“But ‘glory’ doesn't mean a ‘nice knock-down argument,” Alice objected.

“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”

“The question is,” said Alice, “whether you can make words mean so many different things.”

“The question is,” said Humpty Dumpty, “which is to be master, that's all.”

When applied bioethics confronts the topic of futility, the question of who is to be master turns out to be central. Indeed, much of the literature on futility has focused on exactly this question: who gets to define the terms of the debate? Who gets to decide that treatment is “futile” and therefore allowably withheld or withdrawn?

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes (other than those of medical geneticists) toward disclosure of confidential genetic information to third parties.

The use of aborted fetal tissues in research and therapy (FTT) has raised exciting possibilities and a host of social, legal and ethical issues. Perhaps the most difficult issue is whether the use of materials from elective abortion can be viewed and weighed separately from the abortion itself, or if in using these tissues there is inherent complicity with the abortion act. Those who oppose FTT claim that there is complicity with the abortion act and liken the use of fetal tissue from abortions to the use of data from the Nazi experiments. Within this lobby are those who claim that the option to donate fetal tissues will make abortion a more attractive alternative for pregnant women, and that there are doctors who will offer fetal tissue donation as a positive incentive to abortion-with the net effect that more abortions will take place.

More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.

The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not adequate morally to justify the participation of children in the nontherapeutic role of organ donor. Next, I argue that the moral justification of the child’s participation must be based on the intimate family relationship which permits activities that would be unacceptable in the public domain. In the third section, I argue that family autonomy ought to be limited by the principle of respect for persons. In the fourth section, I propose five principles to guide the participation of children as organ donors. In section five, I discuss the role of the child in the decision-making process. In section six, I critically examine the criteria for equity in donor selection.