Human Rights in Hospitals: an End to Routine Shackling.

Medical students (NSB, NM, JDW) spearheaded revision of the policy and clinical practice for shackling incarcerated patients at Boston Medical Center (BMC), the largest safety net hospital in New England. In American hospitals, routine shackling of incarcerated patients with metal restraints is widespread-except for perinatal patients-regardless of consciousness, mobility, illness severity, or age. The modified policy includes individualized assessments and allows incarcerated patients to be unshackled if they meet defined criteria. The students also formed the Stop Shackling Patients Coalition (SSP Coalition) of clinicians, public health practitioners, human rights advocates, and community members determined to humanize the inpatient treatment of incarcerated patients. Changes pioneered at BMC led the Mass General Brigham health system to follow suit. The Massachusetts Medical Society adopted a resolution authored by the SSP Coalition, which condemned universal shackling and advocated for use of the least restrictive alternative. This will be presented to the American Medical Association in June 2024. The Coalition led a similar effort to coauthor a policy statement on the issue, which was formally adopted by the American Public Health Association in November 2023. Most importantly, in an unprecedented human rights victory, a BMC patient who was incarcerated, sedated, and intubated was unshackled by correctional officers for the purpose of preserving human dignity.

Trust, Brutality, and Human Dignity: How "Partial Birth Abortion" Helps Shape American Biopolitics.

In this Article, I explore how nearly continuous public rhetorical challenges to abortion in the political realm first led the public and the courts to turn away from a particular abortion procedure (intact dilation and extraction, also known as partial-birth abortion) which political agitators labeled as "barbaric" and then to view physicians who performed abortions not as legitimate professionals, but simply as "abortionists," and sometimes as evil "Frankensteins." "Abortionists" use no "medical judgment" and are unworthy of deference by state legislatures, Congress, or the courts when deciding how or when to perform an abortion. The concentration on the welfare of fetuses and the actions of physicians permitted the abortion debate to bypass discussion of both the rights and welfare of pregnant patients, including their right to health, and to virtually never mention that abortion restrictions primarily affect people in poverty who cannot afford to seek reproductive health care, including an abortion, by traveling to a nonrestrictive state. Understanding the power of extreme rhetoric, including the use of social media in political campaigns and the use and misuse of concrete terms such as murder, infanticide, brutality, and dismemberment, and abstract concepts such as "human dignity," can help us plot a post-Dobbs way forward. Perhaps the demise of Roe can lead to a birth of a new rhetoric on abortion, one that concentrates on the right to health of everyone, including the right to make reproductive decisions, and requires moving abortion back into the realm of contemporary medicine, complete with a meaningful doctor-patient relationship protected by privacy and financed in a way that is accessible to all pregnant patients.

Genome Editing 2020: Ethics and Human Rights in Germline Editing in Humans and Gene Drives in Mosquitoes.

The moon landing, now more than a half century in the past, has turned out to be the culmination of human space travel, rather than its beginning. Genetic engineering, especially applications of CRISPR, now presents the most publicly-discussed engineering challenges-and not just technical, but ethical as well. In this article, I will use the two most controversial genomic engineering applications to help identify the ethics and human rights implications of these research projects. Each of these techniques directly modifies the mechanisms of evolution, threatens to alter our views of ourselves as humans and our planet as our home, and presents novel informed consent and dual use challenges: human genome editing and gene drives in insects.I begin with a discussion of so far disastrously unsuccessful attempts to regulate germline editing in humans, including a summary of the first application of germline genome editing in humans and its aftermath. I then turn to a discussion of setting ethical standards for a genomic technology that has not yet been deployed in nature-gene drives. Finally, I end by suggesting that human rights can and should be directly applicable to defining the ethics of genomic research.

Beyond Nazi War Crimes Experiments: The Voluntary Consent Requirement of the Nuremberg Code at 70.

The year 2017 marks both the 70th anniversary of the Nuremberg Code and the first major revisions of federal research regulations in almost 3 decades. I suggest that the informed consent provisions of the federal research regulations continue to follow the requirements of the Nuremberg Code. However, modifications are needed to the informed consent (and institutional review board) provisions to make the revised federal regulations more effective in promoting a genuine conversation between the researcher and the research subject. This conversation must take seriously both the therapeutic illusion and the desire of both the researcher and the research subject not to engage in sharing uncertainty.

Cure research and consent: the Mississippi Baby, Barney Clark, Baby Fae and Martin Delaney.

Trials using children as subjects are much more problematic from an informed consent perspective than trials on competent adults, although the 'therapeutic misconception' is a central concern in both. The role of famous experiments and the use of one individual's experience to designate and justify a whole category of research have always threatened to undermine the validity of informed consent to research by making it seem to be a validated therapy. In research, the unintended consequence of 'naming' based on goals ('cure') or specific individuals (like the Mississippi Baby) tends to subvert informed consent when the famous case is a 'success', and to prematurely end a line of research if the named subject dies. Names, including the Mississippi Baby, Barney Clark, Baby Fae and even Martin Delaney, are more suggestive of fantasy than science. The word 'cure' should not be used in obtaining consent for HIV 'cure trials', and names of people involved in past experiments should be avoided in the informed consent process. These two modest proposals should reduce the risks of the therapeutic misconception in 'cure research'.

(Public) Health and Human Rights in Practice.

Public health's reliance on law to define and carry out public activities makes it impossible to define a set of ethical principles unique to public health. Public health ethics must be encompassed within--and consistent with--a broader set of principles that define the power and limits of governmental institutions. These include human rights, health law, and even medical ethics. The human right to health requires governments not only to respect individual human rights and personal freedoms, but also, importantly, to protect people from harm from external sources and third parties, and to fulfill the health needs of the population. Even if human rights are the natural language for public health, not all public health professionals are comfortable with the language of human rights. Some argue that individual human rights--such as autonomy and privacy--unfairly limit the permissible means to achieve the goal of health protection. We argue that public health should welcome and promote the human rights framework. In almost every instance, this will make public health more effective in the long run, because the goals of public health and human rights are the same: to promote human flourishing.

Ebola and Human Rights: Post-9/11 Public Health and Safety in Epidemics.

In public health practice, the concepts of health and safety are often conflated. However, protecting and promoting health is radically different from protecting and promoting safety. Since 9/11, the distinctions between health and safety have changed and are in the process of merging. In our terrorism-obsessed world, public health has been increasingly militarized and enlisted, often without protest, into the service of protecting the safety of the public and the security of the nation. But safety and security are the proper purposes of law enforcement and the military, not of public health. More importantly, using public health to combat terrorism is often counterproductive to the population's health, and undermines human rights. Using the Ebola epidemic of 2014, this Article suggests how the post-9/11 reframing of public health goals as including disaster preparedness and counterterrorism, and the new military metaphors we have adopted to describe public health, have deformed our public health agencies, and have made them less trusted by the public. In turn, these agencies are therefore less able to prevent and respond to new infectious diseases. The United States' response to Ebola gives us an opportunity to reconsider the merger of public health and public safety domestically and globally. This Article suggests that a deeper commitment to human rights, especially to the right to health, has the theoretical and practical strength to act as a countervailing force and refocus public health on the health of populations rather than on safety and national security.

(Re)criminalizing Abortion: Returning to the Political with Stories.

Abortion stories have always played a powerful role in advancing women's rights. In the abortion sphere particularly, the personal is political. Following the Court's reversal of Roe v. Wade, abortion politics, and abortion storytelling, take on an even deeper political role in challenging the bloodless judicial language of Dobbs with the lived experience of women.