On September 8, 2015, the Department of Health and Human Services issued a Notice of Proposed Rule Making to revise the Federal Policy for the Protection of Human Subjects, widely known as the “Common Rule.” The NPRM proposes several changes to the current system, including a dramatic shift in the approach to secondary research using biospecimens and data. Under the current rules, it is relatively easy to use biospecimens and data for secondary research. This approach systematically facilitates secondary research with (...) biospecimens and data, maximizing the capacity for substantial public benefit. However, it has been criticized as insufficiently protective of the privacy and autonomy interests of biospecimen and data sources. Thus, the NPRM proposes a more restrictive regime, although more so for biospecimens than data. Both the status quo and the NPRM's proposal are critically flawed. (shrink)

In 2019, several US states passed “heartbeat” bills. Should such bills go into effect, they would outlaw abortion once an embryonic heartbeat can be detected, thereby severely limiting an individual’s access to abortion. Many states allow health care professionals to refuse to provide an abortion for reasons of conscience. Yet heartbeat bills do not include a positive conscience clause that would allow health care professionals to provide an abortion for reasons of conscience. I argue that this asymmetry is unjustified. The (...) same criteria that justify protecting conscientious refusals to provide abortion also justify protecting positive conscientious appeals regarding abortion. Thus, if the law provides legal exemptions for health care professionals who, as a matter of conscience, refuse to provide abortions where it is legal, it should also provide exemptions for health care professionals who, as a matter of conscience, feel obligated to provide abortions where it is illegal. (shrink)

This paper examines the practice implications of various state policies that provide publicly funded prenatal care to undocumented immigrants for health care workers who see undocumented patients. Data were collected through in-depth interviews with purposively sampled health care workers at safety net clinics in California, Maryland, Nebraska, and New York. Health care workers were asked about the process through which undocumented patients receive prenatal care in their health center and the ethical tensions and frustrations they encounter when providing or facilitating (...) this care under policy restrictions. Respondents discussed several professional practice norms as well as the ethical tensions they encountered when policy or institutional constraints prevented them from living up to professional norms. Using Nancy Berlinger's “workarounds” framework, this paper examines health care workers' responses to the misalignment of their professional norms and the policy restrictions in their state. These findings suggest that the prenatal policies in each state raise ethical and professional challenges for the health care workers who implement them. (shrink)

The healthcare system—the assemblage of hospitals, insurers, professional associations, policymakers, patients, caregivers, and other entities oriented toward health in the United States—does more than cure illness. It is, and in some cases ought to be but falls short, attentive to endpoints other than cure, such as comfort, participation in desired activities, and the creation of families—things that may broadly be understood as promoting well-being. In the United States, health care utilization is prohibitively expensive. As a result, most people can only (...) access care through insurance. While the care available within the broad U.S. healthcare system may be oriented toward a wide variety of endpoints, insurance... (shrink)

Person-centered care offers a promising way to manage clinicians’ conscientious objection to providing services they consider morally wrong. Health care centered on persons, rather than patients, recognizes clinicians and patients on the same stratum. The moral interests of clinicians, as persons, thus warrant as much consideration as those of other persons, including patients. Interconnected moral interests of clinicians, patients, and society construct the clinician as a socially embedded and integrated self, transcending the simplistic duality of private conscience versus public role (...) expectations. In this milieu of blurred boundaries, person-centered care offers a constructive way to accommodate conscientious objection by clinicians. The constitutionally social nature of clinicians commits and enables them, through care mechanisms such as self-care, to optimize the quality of health care and protect the welfare of patients. To advance these conditions, it is recommended that the medical profession develop a person-centered culture of care, along with clinician virtues and skills for person-centered communication. (shrink)

On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an (...) end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient–provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID. (shrink)

For too long, bioethics has followed law in reducing “conscience” to “conscientious objection,” in other words, to laws and policies permitting and protecting refusal. In “Reframing Conscientious Care: Providing Abortion Care When Law and Conscience Collide,” Mara Buchbinder and colleagues draw our attention to one dimension of the problem of reducing conscience to refusal to provide certain forms of medical care: what about the conscience problems experienced by the professionals who are attempting to provide safe, effective health care that includes (...) services that others associate with conscientious objection? In seeking to disrupt a specific medical practice—one that is legal, desired by the patient, and conducted in accordance with medical standards—North Carolina House Bill 854, The Woman's Right to Know Act, and laws like it, appear to be designed to produce moral distress in physicians and other professionals involved in the provision of abortions. For abortion providers in North Carolina and other states, conscientious objection to the mandates of laws like HB 854 isn't a realistic option. So what can bioethics offer to professionals bound by such laws? We can start by reclaiming the idea of “conscience” as something that can say “yes” to providing health care. (shrink)