Early in 1970, just as we were organizing The Hastings Center, we had to decide which issues on a long menu of possibilities should receive our early attention. At the top of our list was end-of-life care. Complaints about care for the dying had mounted during the 1960s, fueled by technological progress in sustaining life, by too many patients abandoned by physicians as they lay dying, by a lack of patient choice on how their lives should end, and by woefully inadequate pain management. After a few years of study, the care of the dying seemed to admit of a solution: giving patients more choice by the use of living wills or appointment of a surrogate, improving the training of physicians to better deal with death and discussion with patients, and creating a hospice movement and greatly enhanced palliative care.

On behalf of the Robert Wood Johnson Foundation (RWJF), I want to thank the Public Health Law Association and the American Society of Law, Medicine & Ethics for your leadership and the work that both you and the Centers for Disease Control and Prevention (CDC) have done to grow this field. RWJF is pleased to co-sponsor this conference.

The music that opened this talk is a clip from Warren Zevon, who encouraged us musically to “send lawyers, guns and money.” Zevon was a singer/songwriter and social critic whose songs often took a jaundiced, somewhat cynical point of view. Even so, I know that I am probably stretching his meaning when I think of this song. I see “lawyers, guns and money” as his take on the major drivers of how change happens in a society.

Taken from a published report on wound ballistics research during World War II, Figure 1 depicts the abdomen of a cat that has been shaved, anesthetized, marked with a grid, and shot. The individual squares are frames, the caption says, “(2880 per second) from a high speed motion picture of a cat’s abdomen, showing the volume changes and movements caused by a 6/32nd inch steel sphere.” We can recognize in this image the conventions of scientific inscription. The technologies are sophisticated, quantitative, impressive. The image speaks for itself. Or does it? What exactly is happening when an anesthetized cat with a shaved abdomen painted with a grid gets shot, in a laboratory, and when that event is hyper-documented in high speed photographs, and deployed in a range of texts as evidence? And what do these human creations — these highly quantified experimental wounds — tell us about the culture and practice of twentieth-century science?

Heath care and public health are typically conceptualized as separate, albeit overlapping, systems. Health care’s goal is the improvement of individual patient outcomes through the provision of medical services. In contrast, public health is devoted to improving health outcomes in the population as a whole through health promotion and disease prevention. Health care services receive the bulk of funding and political support, while public health is chronically starved of resources. In order to reduce morbidity and mortality, policymakers must shift their attention to public health services and to the improved integration of health care and public health. In other words, health care and public health should be treated as two parts of a single integrated health system (which we refer to as the health system throughout this article). Furthermore, in order to maximize improvements in health status, policymakers must consider the impact of all governmental policies on health (a Health in All Policies Approach).

The last few years have witnessed the growth of large-scale, population genomics biobanks, which serve as longitudinal, gene-environment databases for future yet unspecified research. An international consortium, the Public Population Project in Genomics (P3G), builds harmonization tools for such biobanks and has catalogued numerous studies — at least 139 with over 10,000 banked participants and 34 with over 100,000. As their potential use for translational, clinical research draws near, it is opportune to clarify the duties of such biobanks to communicate results to participants. To identify the potential obligations, some demystification of the terminology surrounding the return of results as found in international and national norms on biobanking generally is essential. On the whole, our proposed lexicon is based on a study of norms as found in national and international policies but excludes debates found in the literature.

According to Congressional Budget Office projections, the Patient Protection and Affordable Care Act (Affordable Care Act or Act) — assuming it survives the pending legal challenges and is fully implemented — will provide health insurance to 34 million additional Americans by 2021. This will increase the percentage of non-elderly Americans with health insurance from the current rate of 83 percent to 95 percent. Although enactment of the Affordable Care Act constitutes a historic step forward in the nearly century-long effort to ensure universal health insurance coverage, relatively little in the Act focused on the potentially transformative impact of public health efforts that prevent disease. Chronic diseases such as heart disease, cancer, stroke, and diabetes are now responsible for more than 75 percent of health care costs, and reducing the incidence of these diseases — which are often entirely preventable — could dramatically improve the nation’s physical and fiscal health.

Five years ago, an article co-written by some of us (Joly and Simard) presented an emerging trend to disclose some individual genetic results to research participants within the international research community. At the time, ethical norms and scholarly publications on the return of results often did not distinguish between the return of research results in general and the return of unexpected results (also called incidental findings). Both technologies and research practices have evolved significantly. Today whole genome and exome sequencing are increasingly affordable and frequently used in genetic research. Because these techniques produce a vast amount of interpretable and non-interpretable data (i.e., data of unproven significance) about an individual, the issue of how to manage information generated by such technologies needs to be considered. However, the development of international ethical guidelines has not kept up with the rapid pace of technological progress. Indeed developments in genomic biobanking also challenge the duty to disclose research results.

Ask any Civil War historian about the cost of the Civil War and they will recite a host of well-known assessments, from military casualties and government expenditures to various measures of direct and indirect costs. But those numbers are not likely to include an appraisal of the humanitarian crisis and suffering caused by the wartime destruction of slavery. Peace-time emancipation in other regions (the northern U.S., for example) and in other societies (like the British West Indies) certainly presented dangers and difficulties for the formerly enslaved, but wartime emancipation chained the new opportunities and possibilities for freedom to war’s violence, civil chaos, destruction and deprivation. The resulting health crisis, including illness, injury, and trauma, had immediate and lasting consequences for black civilians and soldiers. Although historians are more accustomed to thinking of enslaved people as the beneficiaries of this war, rather than its victims, we cannot assess the cost of this war until we answer two important questions: first, what price did enslaved people have to pay because their freedom was achieved through warfare rather than a peacetime process; and secondly, in this war in which so many Americans paid such a high cost, to what extent did racism inflate the cost paid by people of African descent? In answering these questions, we reconsider this specific war, but we must also tie the U.S. Civil War to a larger scholarship on how wars impact civilians, create refugee populations, and accelerate harsh treatment of people regarded as racial, religious, or ethnic outsiders. We are reminded that war is not an equal-opportunity killer.

In this essay I ask the reader to consider the “end of life” as a life stage, rather than as a health state. At one end of the life course is childhood and at the other end is elderhood. The basic inter-generational social compact in most societies is that working adults take care of their children and their parents, and count on their children to do the same for them. In developed countries, these obligations are met in part through government programs, with taxpayers funding significant portions of education, health care, and income support.

No one who attended the 2010 national public health law conference hosted by the Public Health Law Association (PHLA) and the American Society of Law, Medicine & Ethics (ASLME) could miss the sense of excitement and momentum. The revival of this annual public health law meeting, with the support of the Robert Wood Johnson Foundation (RWJF), the energetic leadership of the PHLA president and board, ASLME’s expert guidance, and a rousing address by Dr. Tom Frieden, Director of the Centers for Disease Control and Prevention (CDC), symbolize the continued commitment of a wide range of important individuals and institutions to the proposition that law is of substantial importance to public health. But there is more than just symbolism to be excited about. CDC’s public health law program continues to champion efforts to promote the use and understanding of law as a public health tool.

Does law matter regarding public health outcomes? Regardless of what one may think about the answer to this age-old question, in recent years the public health community has increasingly demonstrated and recognized the roles that public health laws and policies play in effectuating long-lasting and broad-based population-wide changes. Public health laws and policies have been instrumental in the following ways: reducing smoking prevalence; reducing underage alcohol-related drinking, driving, crashes, and fatalities; reducing exposure to second-hand smoke; eliminating vaccine–associated paralytic poliomyelitis (VAPP); increasing seat-belt use and reducing traffic fatalities; reducing dental carries; and reducing access to and consumption of unhealthy foods and beverages sold in schools and to reductions in caloric intake and overweight. In fact, in a review of the ten greatest public health achievements in the 20th century, all were influenced by policy change.

In 2008, Susan L. Smith published “Mustard Gas and American Race-Based Human Experimentation in World War II.” Research, undertaken by the US Army, attempted to quantify the effect of mustard gas (actually a volitile liquid) and othe chemical agents on people from different racial groups. This was based on the idea that different races would respond differently to the toxins, and in particular that this would be evident through dermal reaction. In other words, different skin color might mean different skin constitution. Some of the testing seemed reasonable, since new chemicals and equipment had been developed since 1919, and the racial issue added another dimension to the research. On closer examination, the testing was primarily based on old chemical agents such as mustard gas, Lewisite and phosgene, and thus the extent of the testing seemed scientifically and medically unnecessary. The chemical agents had been developed, tested, used in battle, the wounded treated and the dead subjected to detailed pathological study. The major combatants in World War I had all committed extensive scientific resources to the study of these agents looking at both offensive and defensive aspects of their use, including toxicity testing. The U.S. Chemical Warfare Service (CWS) had been formed in 1918 to specifically deal with issues such as toxicity tests, so why was the U.S. Army revisiting the subject of chemical weapons testing during World War II?

The passage of the Patient Protection and Affordable Care Act (ACA) in March 2010 represents a significant turning point in the evolution of health care law and policy in the United States. By establishing a legal infrastructure that seeks to achieve universal health insurance coverage in the United States, the ACA targets some of the major impediments to accessing needed health care for millions of Americans and by extension attempts to strengthen the health system to support key determinants of health. Yet, like many newly passed legislative provisions, the ultimate effects and significance of the ACA remain uncertain. Those charged with implementing the ACA face formidable obstacles — indeed, some of the same obstacles that have been erected to impede other major pieces of social legislation in the past — including entrenched political opposition, constitutional challenges, and what will likely be a prolonged struggle over the content and direction of how the law is implemented. As these debates continue, it is nevertheless important to begin to assess the impact that the ACA has already had on health law in the United States and to consider the likely effects that the law will have on public health going forward.

As a matter of respect for the person, it is considered an ethical duty to offer to return research results to participants where appropriate. Nevertheless, the return of individual research results to participants raises many socio-ethical issues and greater challenges when the participant is a child. This discrepancy arises partly because the return of individual pediatric research results entails a tripartite relationship between researcher, child, and parent(s) and is embroiled in numerous considerations (e.g., acting in the best interest of the child, respect for the person, and respect for the autonomy of the parents/child).

Extra caution is required in the pediatric research context because children cannot generally decide (consent) whether they want to be informed of their own research results or whether the results should be disclosed to parents. Children have long been considered a special and vulnerable group, and their parents, as guardians, play a critical role in the consent process. However, with regards to the return of individual research results, this might pose a potential conflict of interest between the current or future desires of the child and those of the parents.

Early announcements of this special journal issue solicited authors interested in contributing articles on the subject of “costs at the end of life.” Those who replied were then informed the title was being changed, on the basis of early subscriber interest (or, perhaps disinterest), in “rational end-of-life treatment.” Because that seemed a still inadequate reflection of the authorial concerns of responding potential contributors, the editors again changed the title, two months later, to “Making Treatments More Rational and Compassionate for the Chronically Critically Ill.” At that point the editors gave up and decided this issue’s final title would be determined only after the papers were submitted and reviewed.