Whether research results should be returned to participants has been an ongoing debate in the research and bioethics communities for years. The debate has become more complicated as advances in technology permit the discovery through genomic sequencing of a growing number of findings that may or may not have clinical relevance for research participants. As part of the larger conversation regarding whether and under what circumstances research results should be returned to participants, research conducted using residual newborn screening dried blood samples (DBS) deserves special consideration due to the nature of newborn screening, the recent controversy regarding the retention and use of DBS, and the impact of this controversy on state newborn screening programs.

Sujatha Jesudason and Tracy Weitz provide an empirical examination of the framing of public discourses related to assisted reproductive technology (ART) and abortion by examining two bills considered by the California legislature in “Eggs and Abortion: The Language of Protection in Legislation Regulating Abortion and Egg Donation in Debate over Two California Laws.” Jesudason and Weitz analyze the framing of two different legislative efforts: one allowing non-physician practitioners to perform non-surgical abortions and the other removing the prohibition on egg donor payment in the research setting. Jesudason and Weitz identified three different memes that were present in the discussion of these two bills: health care providers and scientists as inherently suspect, denial of women of agency through speaking about them as passive actors that things happen to, and the focus on potential harms and the need to protect women from harm. What was most compelling about their article is that they convincingly show how these themes were used as political tools by both anti-choice and pro-choice groups in California. Jesudason and Weitz note that “frames and language matter.”

Language matters. Thus when market language is imposed on the health care system, it seems natural to transform patients into consumers, and patient rights into consumer rights. But patients are not consumers who pick and choose among physicians and treatments on the basis of price and quality. Patients are sick and vulnerable people who are truly not themselves and are incapable of shopping around for the best deal.

Discussions surrounding patient engagement and empowerment often appear to use the terms “patient” and “consumer” interchangeably. But do the two terms hold the same meaning, or is a “patient” a passive actor in the health care arena and a “consumer” an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S.

Medical care in the United States traditionally has focused on the treatment of disease rather than on its prevention. Heart disease, cancer, hypertension, diabetes, and other chronic diseases are the primary drivers of American health care costs; compared to other high-income countries, U.S. health indices are lowest and costs are highest.

A “triple aim” — “improving the individual experience of care, improving the health of populations, and reducing the per capita costs of care for populations” — has gained traction, as the social determinants of health (non-genetic, non-clinical factors including health behaviors, social and economic factors, and the physical environment) are recognized as having significant effects on health outcomes.

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored.

The environment, particularly, land and water, play a powerful role in sustaining and supporting American Indian and Alaska Native communities in the United States. Not only is water essential to life and considered — by some Tribes — a sacred food in and of itself, but environmental water resources are necessary to maintain habitat for hunting and fishing. Many American Indian and Alaska Native communities incorporate locally caught traditional subsistence foods into their diets, and the loss of access to subsistence foods represents a risk factor for food security and nutrition status in indigenous populations. Negative health outcomes, including obesity, diabetes and cancer, have accompanied declines in traditional food use in indigenous communities throughout the United States.

A half century ago, American family lives did not differ markedly by class or region; children were born to married parents, shotgun marriages helped keep the nonmarital birth rate low, and women stayed home unless economics forced them into the workplace. In that era, the Utah Supreme Court cited New York cases in addressing non-marital cohabitation and family reforms that started in California swept much of the country in short order. While we know that our halcyon memories of those years cloak substantial conflict, we did sweep much of it under the rug; politicians, judges, religious leaders, and even family sit-coms in those years expressed remarkable agreement about family aspirations.

As genomic medicine advances and immense amounts of data are generated that may potentially affect human health, there is increasing concern around which of these results matter to participants. There has been considerable debate on which research results to return to participants and when those results should be returned. To date, however, the debates around the return of genomic results have not focused on how those results should be returned, especially when the results come from minority and/or culturally diverse participants. This commentary explores cultural and ethical considerations, and shares insight from my own Navajo background, around returning genomic research results to participants and potentially to families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion.

Rarely do ethics consults focus on genuine moral puzzlement in which people collectively wonder what is the right thing to do. Far more often, consults are about conflict. Each side knows quite well what is “right.” The problem is that the other side is too blind or stubborn to recognize it. And so the ethics consultant is called, perhaps in the hope that s/he will throw the weight of ethics toward one side and end the controversy so everyone can get on with other business.

Perhaps the greater problem in these scenarios is that even if one side “wins” by gaining the power to dictate what happens next, the toxicity permeating the relationships often markedly worsens and other conflicts erupt, major and minor.

The urgent and painful costs of motherhood became strikingly clear, during the spring and summer months of 2014 when Shanesha Taylor, a homeless mother, was arrested for leaving her two children in a parked car, while at a job interview for a Scottsdale, Arizona insurance agency. The single, homeless mother perceived herself as having limited if not desperate options in trying to uplift her family. A new job would have provided more opportunities for her children. Advocates pointed out that she had left the car fan on, windows cracked open, and that it was 71 degrees outside — even though they acknowledged that leaving children alone in cars can be dangerous. Taylor was promptly arrested after completing the interview. A Washington Post reporter remarked that her “mugshot image was a painfully heartbreaking one: a mother, struggling not to cry, tears running down her cheeks.” Months after her arrest, she was finally granted limited visitation with her children. Arizona prosecutors refuse to drop the charges.

Debate over return of results and incidental findings to participants in genetic and genomic research has exploded over the last decade. At this point, there is wide agreement that investigators have a responsibility to anticipate discovery of findings that may warrant return, to incorporate in protocols a plan for evaluating such findings, and to offer at least some of these results to participants consenting to such return. However, the issue of how to handle questions from a participant’s genetic relatives about their own risk, or whether investigators should alert relatives to a genetic risk they may share, has garnered much less attention. Only recently has the genomic research community begun to debate these questions and offer recommendations.

State health departments are at the core of the United States (U.S.) public health infrastructure. Surveillance to monitor trends in disease and injury; the development, coordination, and delivery of services; and public education are some of the core functions health department employees oversee every day. As such, agencies and their employees are well positioned to inform policy decisions that affect the public’s health. However, little is known about the role of health department staff — a sizeable proportion of the public health workforce — as advocates for public health policies, independent of their agency roles. Anecdotally, some health department employees with whom we have spoken expressed reluctance to engage in policy advocacy for fear of violating little known or understood agency or state rules.

Answering important public health questions often requires collection of sensitive information about individuals. For example, our understanding of how HIV is transmitted and how to prevent it only came about with people's willingness to share information about their sexual and drug-using behaviors. Given the scientific need for sensitive, personal information, researchers have a corresponding ethical and legal obligation to maintain the confidentiality of data they collect and typically promise in consent forms to restrict access to it and not to publish identifying data.

The interests of others, however, can threaten researchers' promises of confidentiality when legal demands are made to access research data (e.g., through subpoena). In some cases, the subject of the litigation is tightly connected to the research questions, and litigants' interest in the data is not surprising. Researchers conducting studies on tobacco or occupational or other chemical exposures, for example, are relatively frequent targets of subpoenas.

Over the last century, and especially since the publication of the Belmont Report in 1978, respect for persons, as exemplified by respect for autonomous decision-making, has become a central tenet in the practice of medicine. The authority of cognitively competent adults to make their own healthcare decisions is enshrined in both law and practice in most advanced industrialized nations. The right to consent to or to refuse medical interventions is virtually absolute, but is contingent on the provision of materially relevant information about the benefits and burdens or risks of the proposed treatment as well as the freedom from coercion by others, especially healthcare personnel. This power also extends to the kinds, amounts and details of the proposed intervention, including the option to decline to hear anything, if one so chooses, assuming that this is a rational choice. This respect transfers to other competent individuals who are authorized as surrogates to decide for those who have temporarily or permanently lost the capacity to make their own healthcare decisions.

Drinking water is an important health behavior to support overall child health. Research indicates that children are consuming too little water and too many sugary drinks. Overconsumption of sugary drinks increases child risk for the epidemics of obesity and diet-related chronic diseases like type-II diabetes, stroke, and heart disease. Increasing access to appealing, low-cost drinking water in schools and childcare where children spend much of their time supports efforts to reduce sugary drink consumption. Drinking water infrastructure is key to water access in childcare and schools. In 2012-2013, almost one-third of permanent U.S. school buildings had plumbing systems in fair or poor condition, and almost 40 percent had major renovations or repairs planned.3 Basic plumbing standards for new construction and major renovations or repairs are contained in state and local plumbing codes, and many of these codes are derived from model codes established by private organizations. This article describes the model code process and intervention points where the public health community can work to improve plumbing standards in school buildings and childcare centers.

Thorny and difficult questions permeate the issue of commodification of assisted reproductive technologies (ART) and abortion. Are ART and abortion services or medical treatment? Are those who seek them patients or consumers? How should we understand the complex relationship between money, markets, choice, and the care relationship?

This paper rejects the dichotomy between patient and consumer roles and focuses instead on how attributes of each are meaningful to those seeking health care. Arguing that health care is already commodified, it suggests that both medicine and the market offer strategies for handling commodification. The important questions are how we understand these attributes and their role in care relationships, and which attributes we should encourage. The medical profession and patient role have long accommodated commodification, using fiduciary roles, flat fees and opaque pricing to distance payment and pricing from care provision.

Oocyte donation has been used to treat human infertility for nearly 30 years, and remains particularly popular in helping women of advanced reproductive age, yet it also poses ethical concerns. Due to increasing demand and undersupply of available oocyte (or egg) donors, a niche business has developed in which “agencies” assist physician practices in advertising, recruiting, screening and even “matching” donors to recipients in need of such services. The advent of the Internet has increased the number and visibility of these services, creating a market in which programs bid for women perceived as having desired traits and superior pedigrees. A few questionable ethical aspects of these agencies have been examined by ourselves and others, including patterns of monetary compensation that directly conflict with the American Society for Reproductive Medicine's (ASRM) ethical guidelines, but many questions remain unexamined.

For-profit agencies that recruit and often match egg donors with intended parents exist alongside licensed, professional fertility clinics that actually perform the medical procedures.

Each of us has written about the importance of reframing the debate over public health paternalism. Our individual explorations of the many and varied paths forward from libertarian “nanny state” objections to the “new public health” have been intimately informed by collaboration. This article represents a summary of our current thinking — reflecting the ground gained through many fruitful exchanges and charting future collaborative efforts.

Our starting point is that law is a vitally important determinant of population health, and the interplay among law, social norms, cultural beliefs, health behaviors, and healthy living conditions is complex. Anti-paternalists’ efforts to limit the scope of public health law to controlling only the proximal determinants of infectious diseases are utterly unjustifiable in the face of so much preventable death, disability, and disparity. Equally important, the anti-paternalism push is deeply counter-majoritarian and undemocratic, threatening to disable communities from undertaking measures to improve their own well-being.

Like all her work, Jody Madeira’s “Conceiving of Products and the Products of Conception: Reflections on Commodification, Consumption, ART, and Abortion,” is a rich, nuanced discussion that mixes various conceptual vocabularies (Marxist, semiotics, legal) into a complex dish. If her work is like the best of French cooking, my comment, I fear, will be more like fast food. In the short space I have, I want to pick off a few items of common interest and discussion and reconfigure them.