In July 2018, the Nuffield Council on Bioethics released the report Genome editing and human reproduction: Social and ethical issues, concluding that human germline modification of human embryos for implantation is not ‘morally unacceptable in itself’ and could be ethically permissible in certain circumstances once the risks of adverse outcomes have been assessed and the procedure appears ‘reasonably safe’. The Nuffield Council set forth two main principles governing anticipated uses and envisions applications that may include health enhancements as a public (...) health measure. This essay provides a critique of three aspects in the Nuffield Council’s Report: its presumption of therapeutic efficacy, its inflation of parental rights to create a certain type of child, and its reliance on a specially commissioned report that appears to distort key definitions in international law. (shrink)

This article traces the rapid progression of policy pertaining to human genome germline modifications using genome editing. It provides an overview of how one fertility physician implemented and advertised experimental techniques as part of his fertility clinic services, examines US law and policy, and assesses the impact of rhetoric influencing global policy and interpretation of the law. This article provides an in-depth examination of the medical rationale driving the acceptance of genome editing human embryos in two contexts: to cure disease (...) and treat infertility. It describes complexities in genomics and outlines risks currently associated with genome editing, asserting the available evidence fails to demonstrate genome editing constitutes a curative therapy. (shrink)

Background: Since the passage of the Patient Self-Determination Act, numerous policy mandates and institutional measures have been implemented. It is unknown to what extent those measures have affected end-of-life care, particularly with regard to the do-not-resuscitate order.Methods: Retrospective cohort study to assess associations of the frequency and timing of DNR orders with advance directive status, patient demographics, physician’s specialty and extent of documentation of discussion on end-of-life care.Results: DNR orders were more frequent for patients on a medical service than on (...) a surgical service and were made earlier in the hospital stay for medicine than for surgical patients . 22.18% of all patients had some form of an advance directive in their chart, yet this variable had no impact on the frequency or timing of DNR ordering. Documentation of DNR discussion was significantly associated with the frequency of DNR orders and the time from DNR to death .Conclusions: The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact. Additionally, documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker suffers from dementia and is unable to (...) make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

In the United States at this time, no uniform federal law exists regarding commercial surrogacy, and state statutory schemes vary vastly, ranging from criminalization to legal recognition with contract enforcement. The authors examine how commercial surrogacy agencies utilize the Internet as a means for attracting parents and surrogates by employing emotional cultural rhetoric. By inducing both parents and surrogates to their jurisdiction, agencies circumvent vast discrepancies in state statutory regulative schemes and create a distinct interstate business, absent an efficient regulatory (...) framework or legal recourse in some circumstances. The authors propose a uniform federal regulatory scheme premised upon regulating interstate business transactions to create accountability and legal remedies for both the parents and the surrogate. (shrink)

In July of 2005, Indianapolis witnessed streaming headlines in the local newspaper attempting to distill the confusion surrounding the adoption of two premature infants by an adoptive parent. Thirteen articles and opinion pieces introduced the public to a murky legal and ethical transaction. Stating his overwhelming desire to have children, a New Jersey schoolteacher hired the services of a local attorney. The attorney procured a South Carolina woman for a compensated gestational surrogacy contract. Under the contract, the surrogate and the (...) attorney would meet in Indiana to complete the execution of the contract and transfer parental rights via adoption after the birth of the twins. (shrink)

Although prisons provide on-site primary care, the corrections system relies on external hospitals to provide a variety of healthcare services. Compared to the general population, incarcerated patients experience higher rates of chronic medical conditions, mental illness, substance abuse, cancer, traumatic brain injury, assault, and communicable disease. Certain specialties of clinicians are likely to encounter patients who are incarcerated, which makes it important for clinicians to understand how medical decision-making may differ when the patient is a prisoner. The corrections system retains (...) custody of inmates and is responsible for their welfare, including facilitating necessary medical care. However, this does not permit corrections personnel or a warden to automatically assume the role of the patient's medical decision-maker. Except for narrow exceptions, prisoners do not lose their rights to medical decision-making. In some instances, corrections staff or the prison warden have improperly asserted authority to act as the patient's medical decision-maker, such as when the patient lacks decision-making capacity. This violates ethical principles of bodily integrity, respect, and fairness. This paper provides an overview of medical decision-making for incarcerated patients, how surrogate decision-maker hierarchies apply to incarcerated patients without decision-making capacity, and special considerations for this subset of patients. (shrink)

Until recently, scientific consensus held firm that genetically manipulated embryos created through methods including Mitochondrial Replacement Therapy or human germline genome editing should not be used to initiate a pregnancy. In countries that have relevant laws pertaining to heritable human germline modifications, the vast majority prohibit or restrict this practice. In the last several years, scholars have observed a transformation of scientific and policy restrictions with insistent calls for creating a regulatory pathway. Multiple stakeholders highlight the role of social consensus (...) and public engagement for governance of heritable human germline modifications. However, in the drive to gain public acceptance and lift restrictions, some proponents provide distorted or misleading narratives designed to influence public perception and incrementally shift the consensus. This article describes eight discrete strategies that proponents employ to influence framing, sway public opinion, and revise policymaking of human germline modifications in a manner that undermines honest engagement. (shrink)

Objective To develop an ethically, legally, and clinically appropriate ventilator allocation policy for AdventHealth Tampa and AdventHealth Carrollwood in Tampa, Florida, which could be enacted swiftly during the Covid-19 pandemic. Methods During Spring 2020, a subcommittee of the Medical Ethics Committee established consensus on the fundamental principles of the policy, then built on existing ethical, legal, and clinical guidance. Results The plan was finalized in May 2020. The plan triages patients based on exclusion criteria, prognosis and expected benefit of ventilation, (...) and change in prognosis over time. Decisions are made by committee in order to minimize moral distress among individual patient care providers. Conclusions Due to international concerns about healthcare resource shortages during the Covid-19 pandemic, hospitals need allocation policies informed by the crisis standard of care, the hospital’s ethical duty to plan for an emergency, and federal civil rights laws Policy Implications: This type of policy can serve as a model for other institutions to develop crisis standards of care resource allocation policies, which are a necessary component of disaster planning. (shrink)