Discussion of the ethics of forgoing medically provided nutrition and hydration tends to focus on adults rather than infants and children. Many appellate court decisions address the legal propriety of forgoing medically provided nutritional support of adults, but only a few have ruled on pediatric cases that pose the same issue.

The cessation of nutritional support is implemented most commonly for patients in a permanent vegetative state (often referred to as persistent vegetative state (hereinafter “PVS”)). An estimated 4,000 to 10,000 American children are in the permanent vegetative state, compared to 10,000 to 25,000 adults. Yet the dearth of literature, case reports, and court decisions suggests that physicians and families of pediatric patients stop medically provided nutrition or seek court orders much less frequently.

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types (conceptual skills, social skills, and practical skills), and this starts before the age of 18. Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this generalization, Article 12 (Equal recognition before the law) of the United Nations (UN) Convention on the Rights of Persons with Disabilities (herewith called “the Convention”) addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity.

Public discourse on race-specific medicine typically erects a wall between the scientific use of race as a biological category and the ideological battle over race as a social identity. Scientists often address the potential for these therapeutics to reinforce a damaging understanding of “race” with precautions for using them rather than questioning their very development. For example, Esteban Gonzalez Burchard, an associate professor of medicine and biopharmaceutical sciences at the University of California, San Francisco, states, “We do see racial differences between populations and shouldn’t just close our eyes. Unfortunately, race is a politically charged topic, and there will be evildoers. But the fear should not outweigh the benefit of looking.” Although it is recognized that ideology influences the social meaning of race, it is usually assumed that there is a separate, prior scientific understanding of race that is not contaminated by politics.

The United States’ pursuit of increasingly TRIPS-Plus levels of intellectual property protection for medicines in bilateral and regional trade agreements is well recognized. Less so, however, are U.S. efforts through these agreements, to directly influence and constrain the pharmaceutical coverage programs of its trading partners. The pursuit of increasing levels of intellectual property (IP) protection in successive bilateral and regional trade agreements has been driven, at least in part, by a U.S. desire to achieve standards of protection it anticipated from the TRIPS Agreement, but failed to secure. Despite the conclusion of a global agreement on IP standards that would establish significant protections in countries that had hitherto declined them, the U.S. pharmaceutical industry viewed TRIPS as falling well short of its objectives — particularly in light of the delayed introduction of patent protection in countries that are key suppliers of generic medicines, such as India.

During the past decade, debate has intensified about the role of long-term opioid therapy in the management of chronic nonmalignant pain. Specialists in pain management have discussed the issues extensively and now generally agree that a selected population of patients with chronic pain can attain sustained analgesia without significant adverse consequences. This perspective, however, is not uniformly accepted by pain specialists and has not been widely disseminated to other disciplines or the public. Rather, the more traditional perspective, which ascribes both transitory benefit and substantial cumulative risk to long-term opioid therapy, continues to predominate. According to this perspective, the inevitability of tolerance limits the possibility of sustained efficacy, and other pharmacological properties increase the likelihood of adverse outcomes, including persistent side-effects, impairment in physical and psychosocial functioning, and addiction. If accurate, these outcomes would indeed justify the withholding of opioid therapy for all but the most extreme cases of chronic nonmalignant pain.

Just after midnight on March 21, 2003, a drunk stood on a footbridge over a motorway in a village in Surrey in southern England. After eight pints of beer, he was drunk enough to decide to drop a brick from the overpass into traffic to see if he could hit something; unfortunately, he was not so drunk that he missed. The brick crashed through the windshield on the driver's side of a truck. It hit the driver, Michael Little, in the chest, triggering a fatal heart attack. He stayed conscious long enough to pull the truck safely to the side of the road, thereby perhaps saving other motorists; then he died. The crime was widely publicized, as was the driver's role in preventing any further accidents.

Few topics in international intellectual property law have been as controversial in recent years as the one we are about to examine. In the 1980s and early 1990s, a Diplomatic Conference attempted to revise the oldest international convention providing some protection for patented inventions outside of the domestic laws. Those efforts broke down, largely because developed and developing countries could not agree on the powers that governments should retain to issue compulsory licenses or on the grounds for which these powers could be exercised. The failure of this Conference, held under the auspices of the World Intellectual Property Organization (WIPO), persuaded the technology-exporting countries to link future negotiations concerning international intellectual property protection to the Multilateral Trade Negotiations, known as the Uruguay Round, which got underway in 1986. The end result was Annex IC of the Agreement Establishing the World Trade Organization of 1994, which incorporated a new, comprehensive and relatively elevated set of international minimum standards of patent protection into the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS Agreement).

For a dozen years, my clinical practice has been largely with dying patients, my academic pursuits have focused on medical ethics, and my public service has been mostly at the interface of medicine and law. One would think that I would have “done the right thing” long ago and signed a living will. I have not. This essay is meant to illuminate my reasons. Some of my reasons may apply to others, and I will also mention some concerns that affect others but not me. However, I do not oppose the growth and development of advance directives. Rather, I hope to open the public and professional discussion of how to make decisions for incompetent adults in order to include more varieties of formal and informal advance directives and to force policy-makers to consider how to make decisions for incompetent adults who have no advance directives.

As a physician, I do use advance directives, both formal and informal, with many patients in all of my clinical settings.

Beginning in the 20th century, scientific research came to be dominated by a growing class of credentialed, professional scientists who overwhelmingly displaced the learned amateurs of an earlier time. By the end of the century, however, the exclusive realm of professional scientists conducting research was joined, to a degree, by “citizen scientists.” The term originally encompassed non-professionals assisting professional scientists by contributing observations and measurements to ongoing research enterprises. These collaborations were especially common in the environmental sciences, where citizen scientists participated in counting wildlife and measuring environmental conditions. Later, patient groups began to play a more active role in supporting clinical trials and collecting health records from affected individuals.

Taiwan is an island country situated in the northwest Pacific, close to the southeast of China. The land area is about 36,000 square kilometers. The population of Taiwan is about 23 million, and it consists of the majority Han ethnic groups (it can be further divided into Ho-ló, Hakka, and Mainlander) and dozens of minority groups who are collectively called “Formosan,” an appellation for indigenous peoples in Taiwan. Formosans can be divided into Pingpu (plain-land indigenous peoples) and Gaoshan (mountain indigenous peoples) by their living area. In recent years, marriages between Taiwanese, Mainland Chinese, and Southeast Asians have increased significantly. Because of the genetic background of the Taiwanese people, it was thought to be highly beneficial for Taiwan to establish a biobank specifically designed for the Taiwanese population, as it would enable large-scale cohort studies to be carried out for common diseases occurring in Taiwan.

Drug overdose has recently surpassed motor vehicle accidents to become the leading cause of unintentional injury death in the United States. The epidemic is largely driven by opioids such as oxycodone, hydrocodone, and methadone, which kill more Americans than heroin and cocaine combined. The demographics of overdose have changed over the past few decades as well: according to the latest data, the average overdose victim is now a non-Hispanic white man aged 45-54.

These deaths — over 16,000 per year — are almost entirely preventable. Opioid overdose kills by slowly depressing respiration, a process that can take several hours. It can be quickly and effectively reversed by the timely administration of naloxone, an opioid antagonist that works by displacing opioids from the brain receptors to which they attach, reversing their depressant effect. Naloxone, also known as Narcan, has many benefits and minimal risks. Although it is a prescription drug, it is not a controlled substance and has no abuse potential.

Almost all jurisdictions where physician-assisted death (PAD) is legal require that the requesting individual be competent to make medical decisions at time of assistance. The requirement of contemporary competence is intended to ensure that PAD is limited to people who really want to die and have the cognitive ability to make a final choice of such enormous import. Along with terminal illness, defined as prognosis of death within six months, contemporary competence is regarded as an important safeguard against mistake and abuse, arguably the strongest objections to legalizing PAD.

The insistence on contemporary competence is problematic. It means that someone who has dementia is ruled out as a candidate for PAD, even if she is terminally ill and suffering terrible and unrelievable pain. It also rules out individuals with strong and unwavering desires not to end their life in dementia.

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”

This rubric is woefully inadequate to the task at hand. It ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.

Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics.

Pain is undertreated in the American health-care system at all levels: physician offices, hospitals, long-term care facilities. The result is needless suffering for patients, complications that cause further injury or death, and added costs in treatment overall. The health-care system's failure to respond to patient pain needs corrective action. Excuses for such shortcomings are simply not acceptable any longer.

Physicians have long been accused of poor pain management for their patient. The term “opiophobia” has been coined to describe this remarkable clinical aversion to the proper use of opioids to control pain. If the professional mandate of the health-care professional is to relieve suffering, then physicians are falling far short of their obligations by accepting myths about the use of opioids in the face of evidence to the contrary.

Stem cell science, using both embryonic and a variety of tissue-specific stem cells, is advancing rapidly and offers promise to improve medical care in the future. Yet, with the notable exception of hematopoietic stem cell transplantation, a long-established approach to treating certain cancers of the blood system, this promise is long term and most stem cell research focuses on basic scientific questions or the collection of pre-clinical data. Although some clinical trials are underway, most are focused on safety, and novel effective therapy is likely a long way off. Despite the preliminary nature of most stem cell research, however, numerous clinics around the world offer stem cell “therapies” to patients today outside the context of a clinical trial. Although the number of patients who have received these stem cell-based interventions (SCBIs) is unknown, anecdotal reports suggest a substantial population of patients is willing to try them, despite unresolved questions about their safety and efficacy.

Traditionally, organ retrieval from cadavers has taken place only in cases where the declaration of death has occurred using “brain death” criteria. Under these criteria, specific tests are performed to demonstrate directly a lack of brain activity. Recently, as a result of efforts to increase organ procurement, attention has been directed at the use of so-called “non-heart-beating” donors (NHBDs): individuals who are declared dead not as a result of direct measurements of brain function, but rather as a result of the cessation of heart and respiratory functions. Attempts to obtain organs from such individuals have recently resulted in substantial negative publicity. Claims were made that the deaths of patients were being accelerated in order to get organs, and that sometimes organs were being removed from patients who were not yet dead.

In the United States we prize our freedom as individuals to make our own decisions, however unwise they might seem to others. This devotion to the principle of autonomy (from the Greek “autos” meaning self and “nomos” meaning rule) is obvious in our legal system as well as in a variety of social rules and customs that govern our daily lives.

Difficulties arise, however, when we lose, either temporarily or permanently, the capacity to make our own decisions. Ideally we would have planned ahead for possible incapacity in order to retain control over the future course of our lives. Unfortunately the ideal situation rarely exists. Most of us avoid anticipating the possibility of our own incapacity, and by implication, loss of control. Until recently attention has not been paid to developing and supplying accessible and understandable information about advance directives that could assist us in such planning. And most of us still prefer (or at least resort to) informal, often uninformed, family decision-making arrangements.

Large-scale sequencing tests, including whole-exome and whole-genome sequencing (WES/WGS), are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) have funded studies on clinical and research sequencing under the Clinical Sequencing Exploratory Research (CSER) program as well as studies on return of results (RoR). Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing.

In 2000, the Center for Disease Control and Prevention’s National Center for Environmental Health issued a report that explored some of the ways in which “sprawl” impacts public health. The report has generated great interest, and state health officials are beginning to discuss the relationship between land use and public health. The CDC report has also produced a backlash. For example, the Southern California Building Industry Association labeled the report “a ludicrous sham” and argued that the CDC should stick to “fighting physical diseases, not defending political ones.”

In retrospect, it is probably unfortunate that this report was funded by an organization called “Sprawl Watch.” “Spraw” is a word that has no clear meaning but is applied to a huge range of issues involving suburban development.