A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs.

Employers in the United States (US) increasingly offer personalized wellness products as a workplace benefit. In doing so, those employers must be cognizant of not only US law but also European Union (EU) law to the extent that the EU law applies to European immigrants or guest workers in the US. To the extent that wellness programs are implemented in either public health or employment contexts within the US and/or EU, sponsors of these programs can partner with direct-to-consumer (DTC) genetic testing companies and other digital health companies to generate, collect, and process sensitive health information that are loosely or partially regulated from a privacy and nondiscrimination standpoint. Balancing claims about the benefits of wellness programs are concerns about employee health privacy and discrimination and the current unregulated nature of consumer health data. We qualitatively explored the concerns and opinions of public and legislative stakeholders in the US to determine key themes and develop privacy and nondiscrimination best practices. Key themes emerged as promoting a culture of trust and wellness. Best practices within these themes were: (1) have transparent and prominent data standards and practices, (2) uphold employee privacy and nondiscrimination standards, (3) remove penalties associated with biometric outcomes and nondisclosure of sensitive health information, (4) reward healthy behavior regardless of biometric outcomes, and (5) make program benefits accessible regardless of personal status. Employers, DTC genetic testing companies, policymakers, and stakeholders broadly should consider these themes and best practices in the current absence of broad regulations on nondiscriminatory workplace wellness programs.

Therapeutic jurisprudence's future in health law: Bringing the patient back into the picture.

More than 25 years ago, Professors David Wexler and Bruce Winick envisioned broad application of therapeutic jurisprudence (TJ), an interdisciplinary theory of law suggesting that legislatures, regulators, and judges consider the extent to which their decisions impact the psychological well-being of those upon whom the law acts. TJ most obviously plays a significant role in mental health and criminal law, where it originated, but Wexler and Winick long ago opined that TJ could be useful in a wide variety of other disciplines as well. Indeed, TJ has expanded exponentially in application over the years. Yet, although Wexler and Winick originally suggested that health law was an "obvious" field in which it could expand, application of TJ in that discipline has been less robust than one might have expected. This article will examine the extent to which TJ has been applied in health law other than mental health law, categorize the areas of health law in which it has been applied, and suggest future paths for expansive application in this most obvious of areas.

The law and its interaction with medical ethics in end-of-life decision making.

The previous two articles in this series explored the historical and theoretical development of medical decision making from initial reliance on medical beneficence to a more recent emphasis on patient autonomy. The law of withholding and withdrawal of treatment has much in common with medical ethics. It is based on concerns about patient autonomy expressed by courts, legislatures, and the executive branch of the government. Legally, the patient's right of self-determination has been based on a variety of sources ranging from state and federal constitutions to the common law of torts and from cases to statutes and regulations. Understanding the various sources of the law, the distinctions among those sources, and the interaction of the branches of government in this context assists in understanding the law itself. In our federalist system of government, significant legal variations can exist among the states, but although technically valid, excessive concern about compliance with the precise contours of each state's statute when surrogate decision makers are engaging in bedside deliberations is unnecessary. Regardless of source or precise legal contours, the overall goal, which neither the physician nor the patient's surrogate or proxy decision makers should forget, is to honor what the patient would want to have done. Physicians and attorneys will agree on that as a matter of both ethics and the law.

Theresa Marie Schiavo's long road to peace.

The death of Theresa Marie Schiavo came about only after almost 7 years of argument among her family members. Her husband, Michael Schiavo, was convinced that she would have refused the medically supplied nutrition and hydration maintaining her life. Her parents, Robert and Mary Schindler, and her siblings were equally convinced that her condition was not so hopeless that she would have chosen to refuse treatment. The result was a bitter battle reaching through state and federal court systems, legislatures, and chief executives' offices. This article provides introductory factual background for the articles that discuss the Schiavo case in this special issue of Death Studies.

Taking a closer look at the managed care class actions: impact litigation as an assist to the market.

Professor Cerminara examines the use of class action lawsuits to empower individuals to challenge health care decision-making. The article begins by noting the benefits of class actions which provide strength in numbers and a far-ranging impact by challenging policy decisions and encouraging corporate responsiveness. Professor Cerminara concludes that class actions are but one step in the process of empowering individuals and decreasing their resentment of the lack of process currently within the health care system.