The Hastings Center Report examines the moral dimensions of family presence in patient suffering, including the value of witnessing a conscious patient's pain. The report also addresses the ethics of AI and psychiatry, including clinician reactions to absent families and the role-specific obligations of surrogate decision-makers.
The article discusses the ethics of describing gene-editing therapy for sickle cell disease. Despite FDA approval, it argues that framing these treatments as a 'cure' is misleading and may cause unrealistic expectations. The essay also highlights the need for structural drug policy reform to expand freedom.
The development of digital twins, computational models of people's biological systems, has accelerated, but its ethics hasn't kept pace. Key findings include the need for a balanced approach to predict disease, personalize care, and test treatments while ensuring human rights and dignity.
This report explores how cultural narratives about dementia impact healthcare and social programs in the US. It invites readers to imagine new narratives to help people with dementia live good lives while reducing caregiver burdens.
The Hastings Center has released recommendations and practical tools for conducting ethical first-in-human pig kidney xenotransplant clinical trials. The guidelines focus on eligibility for participation, monitoring for infectious diseases, and metrics for evaluating the success of the trials.
A special report identifies actions to enhance justice in genomics, ensuring fair access to research, promoting diversity, and protecting privacy. Researchers can reform practices that perpetuate racism, ensure disability inclusion, and democratize data sharing.
A new NIH-funded project aims to address gene therapy's ethical and policy challenges, gathering information from experts in six domains. The study will provide recommendations for addressing these challenges, with implications for patient safety and health outcomes.
The Hastings Center has received $1.5 million in funding from PCORI to develop a measure of organizational trustworthiness and investigate its role in shaping research engagement processes and outcomes. The study aims to strengthen patient-centered and stakeholder-driven comparative clinical effectiveness research.
A new series of essays explores the ethics and social issues raised by brain research, including post-trial obligations for human participants in neural-device trials. The studies reveal that injury and illness rob individuals of personal identity, while neuromodulation can restore it.
The Hastings Center's new special report reviews options for supporting better lives of people facing dementia. The report analyzes care inequities and recommends policy changes to reduce financial hardships and social isolation associated with the diagnosis. It also explores emerging topics in health law and healthcare practice.
Leading experts recommend five major factors for FDA trustworthiness, including procedural and substantive conditions, to enhance public trust in its decisions. The report aims to rebuild trust in health care and science after controversies around vaccine approvals.
An international team recommends a new ethical framework for human research on commercial spaceflight, aiming to address underrepresentation and ensure benefits are relevant to all. The framework is anchored in four guiding principles, including promoting diversity among researchers and participants.
Experts discuss the moral implications of telemedicine on the patient-physician relationship. Telemedicine can improve care for certain patients but may also raise questions about the nature of this encounter and the importance of touch in medical interactions. The Hastings Center Report explores the complex ethical issues surrounding ...
The Hastings Center's Institutional Review Board (IRB) has implemented an evidence-based intervention to address racism and promote equity in biomedical research. The IRB now requires researchers to define racial and ethnic classifications, state whether they are describing or explaining differences between groups, and provide justific...
An Australian interview study suggests that advance research directives (ARD) can facilitate informed consent for people with dementia. The study also highlights the importance of family members as proxy decision-makers. In another article, a competency framework is proposed to improve health research ethics education.
The US has implemented laws banning transgender youth from competing in sports according to their gender identity. However, existing evidence does not support these restrictions, as they would deprive vulnerable trans youth of physical, mental, and social benefits. The article proposes changes to promote a more inclusive and fair athle...
The Hastings Center's new report provides direction for research and communications in social and behavioral genomics, highlighting both potential benefits and significant risks. The report recommends engaging with stakeholders, justifying population definitions and phenotype measurement, and conducting studies with adequate power.
The article discusses concerns about the integrity of research and the well-being of participants due to financial conflicts of interest. The authors argue that disclosing these conflicts to potential participants may not achieve their intended moral goals, highlighting the need for improved policies.
A new report by The Hastings Center recommends clearer ethics guidelines and enhanced oversight for human-animal chimera research, which raises questions about animal welfare and moral status. The report also highlights the potential benefits of this research, including better disease models and organ transplantation.
A new study explores the ethics of disclosing Alzheimer's disease biomarker information to cognitively unimpaired research participants, highlighting conflicting norms and nuanced policy recommendations. The authors suggest policies for disclosure in various research settings, emphasizing the need to prioritize participant well-being a...
The Hastings Center introduces five ethical criteria to improve human subject protections in phase I healthy volunteer trials and research biopsies. These guidelines focus on translational science value, fair opportunity and burden sharing, fair compensation for service, experiential welfare, and enhanced voice and recourse.
The current Medicaid sterilization waiting period for females is clinically unjustifiable, according to the authors, who argue for its revision. The US healthcare industry contributes significantly to greenhouse gas emissions, with a data-driven action plan proposed for carbon reduction.
The article discusses new guidelines for big data research, including the potential for group harm. It also explores biobank research from an African American community's perspective and the implementation of electronic consent procedures during the COVID-19 pandemic.
A new Hastings Center special report calls on bioethics to take a lead in addressing racial injustice and health inequities in the US. The report highlights structural racism and anti-Black racism in healthcare settings and proposes transformations in bioethics scholarship, education, and research.
As polygenic embryo testing becomes more accessible, experts raise concerns about profound ethical implications and unclear benefits. The use of polygenic risk scores during in vitro fertilization raises questions about social outcomes like educational attainment and justice issues.
The Hastings Center Report examines four key considerations for assessing risk-trade-offs in the pandemic, including education, economies, healthcare, travel, social engagement, and medical countermeasures. The report also challenges traditional notions of advance directives in end-of-life care, proposing a new principle of patient aut...
A new report by The Hastings Center suggests that releasing gene-edited species into the wild demands deep public engagement. The report proposes a path forward for inclusive, values-based decision-making through public deliberation.
A new four-year study identifies appropriate ethical and policy guidance for translational xenotransplantation kidney clinical trials. The research team will develop recommendations and decision aids for transplant candidates, clinicians, and institutional review boards reviewing xenotransplantation protocols.
The Hastings Center Report explores the debates around crisis standards of care, which involve health care rationing. Bioethicists offer alternative approaches to preserve life-years while adhering to beneficence, respect for persons, and justice.
A new open-access repository aggregates and enhances FAQs by genomics researchers to explain their studies and debunk bias. The repository provides easily accessible information for various stakeholders, including policymakers, journalists, industry, and patient groups.
The article considers the ethical issues surrounding enrolling children with neurodevelopmental conditions, such as autism spectrum disorder and fragile X syndrome, in clinical trials. Parents may face difficult decisions about whether to enroll their children due to concerns about potential loss of positive aspects of their condition.
Clinical ethicists discuss activist language and its impact on healthcare crises, including triage policies and racial disparities. The article highlights four calls to action: recognizing barriers, supporting antiracism work, advocating for policy change, and engaging in institutional activism.
The FDA's approval of aducanumab for Alzheimer's disease treatment has sparked ethical issues, with billions of dollars in Medicare resources at risk. Physicians face difficult choices between facilitating unjust access to the drug or denying it to desperate patients and families.
Environmental injustices, such as toxic landfills and chemical plants, are often located in predominantly Black, Latinx, and Indigenous neighborhoods, threatening the health of these populations. The Hastings Center Report highlights the need for bioethics to consider environmental injustice in its principles of justice.
A new study reveals that American Indian and Alaska Native individuals are underrepresented in clinical studies, with only 1% of participants from these groups. The authors call for further research to improve ethical inclusion in clinical research.
Artificial intelligence natural language computer applications hold promise for health care, but their potential and pitfalls need thoughtful exploration. The authors identify realistic applications such as relieving routine tasks and improving customer service, but also emphasize the need for 'serious guardrails' to prevent harm.
Family clustering is a confirmed phenomenon associated with COVID-19, causing extreme emotional and physical distress among family members. The article provides strategies for patients, doctors, nurses, and families to navigate this challenging situation, including addressing guilt and shame stemming from transmission of the disease.
The article suggests reversing the FDA's default assumption of prescription-only status for new drugs to prioritize patient autonomy. This approach could lead to over-the-counter availability of various drug products, including oral contraceptives and statins.
A new Hastings Center project aims to develop an ethics framework for scientists to anticipate and prevent biases in health data models. The framework will consider data use, bias toward white populations, and equitable interventions to address health disparities.
The opioid crisis presents complex ethical challenges, including the conflation of pain policy with drug policy. Researchers argue that tailoring policy to root causes can improve treatment outcomes. Disentangling these issues is crucial for developing humane and ethical solutions.
A new Hastings Center special report critiques the role of genomics in perpetuating racism and inequality. The report argues that genomic knowledge can thwart medicine's advancement of justice and create new forms of social classification and surveillance.
Early human challenge trials of SARS-CoV-2 vaccines may be the correct test of ethics, meeting equitable distribution principles. An international governance system is proposed to oversee access to Covid-19 vaccines and treatments.
New articles in the Hastings Center report explore the ethics of COVID-19 vaccine distribution, with a focus on social justice and historical disadvantage. The articles discuss the allocation of scarce resources, safety concerns for healthcare workers, and the impact on marginalized communities.
The Hastings Center recommends a triage protocol that prioritizes patients most likely to survive with treatment. However, critics argue that this approach may be biased against people with disabilities, who often face barriers in accessing care. The authors aim to balance life-saving interventions with respect for human dignity.
The essay offers guidance on how to ethically allocate scarce health goods and services during the Covid-19 pandemic. The authors recommend a 'World War II-style mobilization' to project urgently needed resources and ensure fair distribution of scarce resources, prioritizing marginalized populations.
The US healthcare system is facing significant mistrust issues, with experts calling for action to improve patient trust and care. Experts recommend five actions: exploring patients' mistrust, developing individual and institutional efforts to mend and prevent mistrust, being culturally humble, making empathy part of relationships, and...
The article discusses the vulnerability of crowdsourced research participants and the need for improved ethics oversight. Proposed measures include encouraging collective action by crowd workers and ground-up crowdsourced research ethics guidelines, as well as reviewing the differences between expanded access and Right to Try pathways.
A new study found that nearly one-quarter of people living with HIV are willing to participate in clinical trials that carry significant risks, including near-certain death, in exchange for the potential of an HIV cure. The study highlights the need for additional ethical safeguards when enrolling individuals in such high-risk research.
The Hastings Center Report highlights concerns over GoFundMe's role in facilitating unproven medical treatments, which can harm donors and recipients. The report also explores the doctor burnout crisis, advocating for legal interventions to safeguard healthcare workers' safety and well-being.
The article discusses human-animal chimeras with brains composed of human cells, raising questions about their moral status. The author argues that a standard view, which considers human cognitive capacities morally significant, is mistaken and proposes a better framework for thinking about the moral status of part-human beings.