Medical Decision-Making for Children in Families with Siblings: parental discretion and its limits.

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with Stakeholders.

BACKGROUND: Apolipoprotein L1 (ApoL1) variants G1 and G2 are associated with a higher risk of kidney disease. ApoL1 risk variants are predominantly seen in individuals with sub-Saharan African ancestry. In most transplant centers, potential organ donors are being selectively genetically tested for ApoL1 risk variants. Transplant programs have highly variable ApoL1 testing practices and need guidance on essential ApoL1 clinical policy questions. METHODS: We conducted a Delphi consensus panel focused on ApoL1 clinical policy questions, including who gets tested, who decides whether testing occurs, how test results are shared, who receives test results, and how test results are used. A total of 27 panelists across seven stakeholder groups participated: living kidney donors ( n =4), deceased donor family members ( n =3), recipients of a deceased donor kidney ( n =4), recipients of a living donor kidney ( n =4), nephrologists ( n =4), transplant surgeons ( n =4), and genetic counselors ( n =4). Nineteen panelists (70%) identified as Black. The Delphi panel process involved two rounds of educational webinars and three rounds of surveys administered to panelists, who were asked to indicate whether they support, could live with, or oppose each policy option. RESULTS: The panel reached consensus on one or more acceptable policy options for each clinical policy question; panelists supported 18 policy options and opposed 15. Key elements of consensus include the following: ask potential donors about African ancestry rather than race; make testing decisions only after discussion with donors; encourage disclosure of test results to blood relatives and organ recipients but do not require it; use test results to inform decision making, but never for unilateral decisions by transplant programs. CONCLUSIONS: The panel generally supported policy options involving discussion and shared decision making among patients, donors, and family stakeholders. There was general opposition to unilateral decision making and prohibiting donation altogether.

Transparency in controversial research: A review of human embryo research publication ethical disclosure statements.

In 2021, the International Society for Stem Cell Research (ISSCR) released updated guidelines that included human embryo research guidance. Requiring ethics statements in publications using human embryos is one way to verify adherence to these guidelines. A review of top-tier biomedical journal requirements identified only one publisher that requires a human embryo statement. A review of articles using human embryos from top-tier biomedical journals found that all contain some form of ethics statement, but they differ in content and location. Requiring ethics statements with specific elements could improve transparency and adherence to research guidelines.

Ethical, legal, regulatory, and policy issues concerning embryoids: a systematic review of the literature.

Recent advances in methods to culture pluripotent stem cells to model human development have resulted in entities that increasingly have recapitulated advanced stages of early embryo development. These entities, referred to by numerous terms such as embryoids, are becoming more sophisticated and could resemble human embryos ever more closely as research progresses. This paper reports a systematic review of the ethical, legal, regulatory, and policy questions and concerns found in the literature concerning human embryoid research published from 2016 to 2022. We identified 56 papers that use 53 distinct names or terms to refer to embryoids and four broad categories of ethical, legal, regulatory, or policy considerations in the literature: research justifications/benefits, ethical significance or moral status, permissible use, and regulatory and oversight challenges. Analyzing the full range of issues is a critical step toward fostering more robust ethical, legal, and social implications research in this emerging area and toward developing appropriate oversight.

Pediatric Decision Making: Consensus Recommendations.

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question "In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.

A survey of solid organ transplant recipient attitudes and concerns regarding contraception and pregnancy.

INTRODUCTION: Many women who are solid organ transplant (SOT) recipients wish to have children after transplantation. Contraception is an important component of post-transplant planning and care, given the increased risk associated with post-transplant pregnancies. We sought to understand patient attitudes and concerns about post-transplant contraception and pregnancy. METHODS: Following a comprehensive literature review, our team developed a survey that was administered to female SOT recipients of childbearing age. We used descriptive and inferential statistics to characterize participant views RESULTS: A total of 243 transplant recipients completed the survey (80.7% response rate). The mean age of respondents was 37.5 years (±8.1 years), 66.7% were kidney recipients, and 40.7% were within the first year after transplant. The most common concerns among respondents included fetal and maternal health complications. Participants generally did not agree that transplant recipients should be advised to avoid pregnancy. There was strong support for shared decision-making about pregnancy after transplantation CONCLUSION: Understanding patient perspectives can help transplant providers make better care recommendations and support patient autonomy in reproductive decisions post-transplant. Given that there are some differences in views by transplant type, individualized conversations between patients and providers are needed.

Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.

Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.

Ethics Considerations in Laws Restricting Incapacitated Patients' Access to ECT.

Electroconvulsive therapy (ECT) is a safe and effective treatment used for numerous psychiatric conditions. While many patients for whom ECT is indicated are able to give voluntary informed consent, some lack decision-making capacity (DMC), at least temporarily. Case reports from numerous countries involving ECT for patients who lack DMC indicate overall positive outcomes and high patient satisfaction with results comparable with those of consenting patients; some patients regain DMC with ECT. Laws and regulations pertaining to ECT vary widely around the world and across the United States. Many United States jurisdictions over-regulate ECT relative to other interventions with comparable risks and potential benefits. While laws restricting whether and under what circumstances patients who lack DMC may receive ECT likely are aimed at protecting incapacitated persons, such laws sometimes undermine important ethics obligations and should be re-evaluated.

Ignorance is Not Bliss: The Case for Comprehensive Reproductive Counseling for Women with Chronic Kidney Disease.

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population.

Counselling, Research Gaps, and Ethical Considerations Surrounding Pregnancy in Solid Organ Transplant Recipients.

Survival after solid-organ transplantation has improved significantly, and many contemporary transplant recipients are of childbearing potential. There are limited data to guide decision-making surrounding pregnancy after transplantation, variations in clinical practice, and significant knowledge gaps, all of which raise significant ethical issues. Post-transplant pregnancy is associated with an increased risk of maternal and fetal complications. Shared decision-making is a central aspect of patient counselling but is complicated by significant knowledge gaps. Stakeholder interests can be in conflict; exploring these tensions can help patients to evaluate their options and inform their deliberations. We argue that uniform, evidence-based recommendations for pregnancy after solid organ transplantation are needed. Conducting research, including patient-engaged studies, in this area should be priority for the transplant community.

(Re)-Emerging Challenges in Christian Bioethics: Leading Voices in Christian Bioethics.

This is the third installment in a Christian Bioethics series that gathers leading voices in Christian bioethics to examine the themes and issues they find most pressing. The papers address fundamental theoretical questions about the nature of Christian bioethics itself, long-standing ethical issues that remain significant today, including physician-assisted suicide, euthanasia, the definition of death, the allocation of scarce resources, and finally, more futuristic questions regarding transhumanism. The contributions underscore the enduring significance of Christian engagement in bioethics.

Heads, Bodies, Brains, and Selves: Personal Identity and the Ethics of Whole-Body Transplantation.

Plans to attempt what has been called a head transplant, a body transplant, and a head-to-body transplant in human beings raise numerous ethical, social, and legal questions, including the circumstances, if any, under which it would be ethically permissible to attempt whole-body transplantation (WBT) in human beings, the possible effect of WBT on family relationships, and how families should shape WBT decisions. Our assessment of many of these questions depends partially on how we respond to sometimes centuries-old philosophical thought experiments about personal identity. As with so much in bioethics, it is impossible to escape, or at least inadvisable to try to bypass, the relevant foundational philosophical concerns.

Earning Mistrust through Fake Compromises and Broken Promises.

Recent developments in human embryo research generate warranted public mistrust in science and scientists' willingness to honor commitments and respect limits. Patients, research participants, and society as a whole are asked to trust physicians, scientists, and biomedical institutions. Consistently honoring the laws, regulations, policies, and guidelines that govern science and health care practice is essential for earning and maintaining trust. Removing long-held and widely adopted limits on human embryo research, especially without publicly renegotiating a limit originally adopted following significant public discussion, undermines confidence in the self-regulation of science and the reliability of scientists' statements.

Impact of education on APOL1 testing attitudes among prospective living kidney donors.

It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.