The Real Impact of the Alabama Supreme Court Decision in LePage v Center for Reproductive Medicine.

This Viewpoint breaks down the myriad ways the Alabama Supreme Court decision to declare frozen embryos as legal equivalents to children harms the health of mothers and fetuses, limits reproductive decision-making based on genetics and out-of-reach costs, and impedes research.

Ethical Challenges of Advances in Vaccine Delivery Technologies.

Strategies to address misinformation and hesitancy about vaccines, including the fear of needles, and to overcome obstacles to access, such as the refrigeration that some vaccines demand, strongly suggest the need to develop new vaccine delivery technologies. But, given widespread distrust surrounding vaccination, these new technologies must be introduced to the public with the utmost transparency, care, and community involvement. Two emerging technologies, one a skin-patch vaccine and the other a companion dye and detector, provide excellent examples of greatly improved delivery technologies for which such a careful approach should be developed in order to increase vaccine uptake. Defusing fears and conspiracy mongering must be a key part of their rollout.

Research involving the recently deceased: ethics questions that must be answered.

Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria-or 'research involving the recently deceased'-can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor's legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.

Regaining Trust in Public Health and Biomedical Science following Covid: The Role of Scientists.

Biomedical science suffered a loss of trust during the Covid-19 pandemic. Why? One reason is a crisis fueled by confusion over the epistemology of science. Attacks on biomedical expertise rest on a mistaken view of what the justification is for crediting scientific information. The ideas that science is characterized by universal agreement and that any evolution or change of beliefs about facts and theories undermines trustworthiness in science are simply false. Biomedical science is trustworthy precisely because it is fallible, admits error, adjusts to new information, and, most importantly, is practical. Successful diagnosis and cure demarcate the boundaries of warranted knowledge. The other reason is sociological. As the pandemic made all too clear, the loss of faith in scientific experts was due to the failure of most of them to engage in regular public dialogue, reflecting a failure to recognize the obligation that science has to bolster trust in its work and findings by concerted public engagement.

Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?

Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed consent process; and criteria for waivers of informed consent. In accordance with respect for persons and communities, investigators and IRBs should systematically consider potential group harm when designing and reviewing protocols, respectively. Research participants should be informed about any potential group harm in the consent process. We call for additional public discussion, empirical research, and normative analysis on these issues to determine the right regulatory and policy path forward.

The legacy of Covid denialThe Deadly Rise of Anti-science: A Scientist's Warning Peter J. Hotez Johns Hopkins University Press, 2023. 240 pp.

A physician warns of the broader implications of pandemic backlash.

Determining the right "dose" of genetic testing for gamete donors.

IMPORTANCE: Genetic testing of gamete donors is becoming increasingly comprehensive and now often includes expanded carrier screening. Some argue that testing has gone too far, whereas others propose that testing is not extensive enough. Thinking critically about how much genetic testing is appropriate for gamete donors is crucial for ensuring that market forces alone do not determine the level of testing that is performed. OBJECTIVE: The goal of this paper is to highlight contradictions in the current approach toward genetic testing of gamete donors and to suggest that we either embrace the value of preventing the birth of children with hereditary diseases and do so in a logical and consistent manner or consider reducing our level of genetic testing for gamete donors. EVIDENCE REVIEW: The Food and Drug Administration requires screening for infectious diseases and the American Society for Reproductive Medicine recommends screening for a small number of common recessive conditions. However, private donor banks are increasingly performing karyotype testing and expanded carrier screening. FINDINGS: There are 2 major inconsistencies in our current approach to genetic testing of gamete donors: (1) if genetic information is valued by gamete recipients, why should testing stop with recessive conditions, and not expand to dominant conditions or even polygenic risk scoring? (2) Why should gamete donors be asked to undergo testing that may or may not be reciprocated by gamete recipients? Addressing these inconsistencies requires us to consider the ultimate goal of testing gamete donors' genes. We argue that the present, default goal is empowerment of gamete recipients, whereas an alternative and more laudable mission is to avoid preventable, heritable disease in offspring. However, the latter brings its own ethical and practical challenges, including the issue of which diseases are worth preventing. CONCLUSION AND RELEVANCE: A more comprehensive and well-reasoned approach to genetic testing of gamete donors is needed. Otherwise, testing will continue to be haphazard and guided by the free market, rather than deeper societal values.

Leaving a Legacy: Allied Health Professionals' Perceptions of Fertility Preservation and Posthumous Reproduction for Adolescent and Young Adults with a Poor Cancer Prognosis.

Purpose: To explore Allied Health Professionals' (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15-39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis. Thematic analysis was conducted using the constant comparison method. Results: Forty-three AHPs participated in one of seven FGs. Three themes emerged: (1) PAR as palliative care: preserving patient's legacy for their partner, siblings, and parents; (2) ethical and legal considerations for balancing patient's time-sensitive needs; and (3) barriers AHPs encounter navigating complex dynamics of care in this population. Subthemes included an emphasis on patient autonomy, a multidisciplinary approach to counseling, early initiation of fertility discussions continuing over time, documenting reproductive desires, and concerns for family and offspring after patient death. Conclusions: AHPs desired timely conversations on reproductive legacy and family planning. In the absence of institutional policies, training, and resources, AHPs emphasized feeling ill-equipped to navigate the complex dynamics between patients, families, and colleagues. The development of transparent institutional policies, implementation of multidisciplinary care teams, and oversight with ethics committees may improve the provision of reproductive health care and/or end-of-life care for AYA with a poor cancer prognosis and their families.

United in Big Data? Exploring scholars' opinions on academic-industry partnership and the use of corporate data in digital behavioral research.

The growing amount of data produced through digital technologies holds great promise for advancing behavioral research. Scholars worldwide now have the chance to access an incredible amount of personal information, thanks to the digital trace users continuously leave behind them. Private corporations play a crucial role in this scenario as the leading collectors of data on users, thus creating new incentives for partnerships between academic institutions and private companies. Due to the concerns that academic-company partnerships might raise and the ethical issues connected with Big Data research, our study explores the challenges and opportunities associated with the academic use of corporate data. We conducted 39 semi-structured interviews with academic scholars (professors, senior researchers, and postdocs) involved in Big Data research in Switzerland and the United States. We also investigated their opinions on using corporate data for scholarly research. Researchers generally showed an interest in using corporate data; however, they coincidentally shared ethical reservations towards this practice, such as threats to research integrity and concerns about a lack of transparency of companies' practices. Furthermore, participants mentioned issues of scholarly access to corporate data that might both disadvantage the academic research community and create issues of scientific validity. Academic-company partnerships could be a positive development for the advancement of scholarly behavioral research. However, strategies should be implemented to appropriately guide collaborations and appropriate use of corporate data, like implementing updated protocols and tools to govern conflicts of interest and the institution of transparent regulatory bodies to ensure adequate oversight of academic-corporate research collaborations.

Perspectives surrounding fertility preservation and posthumous reproduction for adolescent and young adults with terminal cancer: Survey of allied health professionals.

BACKGROUND: While all reproductive-aged individuals with cancer should be offered fertility preservation (FP) counseling, there is little guidance over offers to adolescent and young adults (AYA) with terminal diagnoses, especially when considering posthumous assisted reproduction (PAR). The Enriching Communication skills for Health professionals in Oncofertility (ECHO/ENRICH) trains Allied Health Professionals (AHPs) to improve communication with AYAs with cancer. Little is known about AHPs' role in assisting in FP and PAR decisions. METHODS: This is a cross-sectional survey of ECHO/ENRICH trainees' attitudes and experience with FP and PAR in AYA with terminal cancer. RESULTS: The response rate was 61% (365/601). While 69% felt comfortable discussing FP with terminal AYA after ECHO/ENRICH training, 85% desired further education. The majority (88%) agreed FP should be an option for AYA with cancer, though some agreed offering FP provided false hope (16%) or was a waste of resources (7%). Most shared that avoidance of FP discussions was common practice, especially in the medically fragile, late-stage disease, or among minors. Many attributed lack of conversations to oncology team goals. Only 9% had prior experience with PAR. Many were conflicted about how PAR reproductive material should be gifted and who should be permitted to use PAR. Several raised moral concerns for PAR, or discomfort advising family. Many voiced desire for additional PAR-specific education. CONCLUSION: ECHO/ENRICH trainees had varied levels of exposure to FP in terminal AYA and limited experiences with PAR. Many expressed uncertainties with PAR, which may be alleviated with further training and transparent institutional policies.

Are We What We Eat? The Moral Imperative of the Medical Profession to Promote Plant-Based Nutrition.

The typical Western diet, high in processed and animal-based foods, is nutritionally and ethically problematic. Beyond the well-documented cruelty to animals that characterizes the practices of the factory-farming industry, current patterns of meat consumption contribute to medical and moral harm in humans on both an individual level and a public health scale. We aim to deconstruct, by highlighting their fallacies, the common positive and normative arguments that are used to defend current nutritional patterns. Animal-based foods promote the mechanisms that underlie chronic cardiometabolic disease, whereas whole-food plant-based nutrition can reverse them. Factory farming of animals also contributes to climate change, antibiotic resistance, and the spread of infectious diseases. Finally, the current allocation of nutritional resources in the United States is unjust. A societal shift toward more whole-food plant-based patterns of eating stands to provide significant health benefits and ethical advantages, and the medical profession has a duty to advocate accordingly. Although it remains important for individuals to make better food choices to promote their own health, personal responsibility is predicated on sound advice and on resource equity, including the availability of healthy options. Nutrition equity is a moral imperative and should be a top priority in the promotion of public health.