ethique_genetics

Genetic sex prediction from human gut shotgun metagenomic data: An ethical appraisal.

Sat, 01 Nov 2025 04:00:00 +0000

Forensic Science International; 11/01/2025
(AN 187720796); ISSN: 03790738
CINAHL Complete

Guidelines for genetic counselling supervision in Europe: a roadmap for ethical, effective, and reflective practice

Sat, 25 Oct 2025 08:18:05 +0000

Author Names: Guimaraes L.,Lemos M.S.,Henriques M.R.,Paneque M.

Database Source: Embase Weekly Updates

Journal Title: European Journal of Human Genetics

Article Title: Guidelines for genetic counselling supervision in Europe: a roadmap for ethical, effective, and reflective practice

Year: 2025

Issue:

Volume:

Abstract: This review article presents key guidelines for developing an effective and structured Genetic Counselling Supervision (GCS) framework for Europe. Based on international best practices and the authors' research at both the European and national levels, these 21 guidelines aim to provide a structured approach that will promote ethical standards, enhance professional well-being, and improve service quality, ensuring the successful implementation of GCS across healthcare settings in Europe. By doing so, this article seeks to address a critical gap identified by professionals and policymakers regarding the lack of clear guidance on what should drive genetic counselling supervision.<br/>Copyright © The Author(s), under exclusive licence to European Society of Human Genetics 2025.

When Ethical Principles Conflict: The Ethics of Genetic Confidentiality in Context.

Wed, 01 Oct 2025 04:00:00 +0000

American Journal of Bioethics; 10/01/2025
(AN 188053962); ISSN: 15265161
CINAHL Complete

Polygenic Risk Scoring and the Duty to Warn...Kilbride, M. 2025. Breaching confidentiality in genetic and non-genetic cases: Two problematic distinctions. The American Journal of Bioethics 25 (10):9–21.

Wed, 01 Oct 2025 04:00:00 +0000

American Journal of Bioethics; 10/01/2025
(AN 188053989); ISSN: 15265161
CINAHL Complete

Breaching Confidentiality in Genetic and Non-Genetic Cases: Two Problematic Distinctions—A Response to Commentators...Menard T. American Journal of Bioethics. 2025,25(10),43-44.

Wed, 01 Oct 2025 04:00:00 +0000

American Journal of Bioethics; 10/01/2025
(AN 188053991); ISSN: 15265161
CINAHL Complete

An end to genetic exceptionalism: reframing the ethics of genomic sequencing for rapid neonatal diagnosis.

Wed, 01 Oct 2025 04:00:00 +0000

Seminars in Perinatology; 10/01/2025
(AN 187866440); ISSN: 01460005
CINAHL Complete

Genetic engineering, biodiversity conservation and bioethics: where do we draw the line? Free.

Mon, 01 Sep 2025 04:00:00 +0000

Journal of Public Health; 09/01/2025
(AN 188173606); ISSN: 17413842
CINAHL Complete

Ethical and regulatory requirements for conducting researcher-driven large-scale multinational genetic haematological studies: the INHERENT experience.

Tue, 05 Aug 2025 04:00:00 +0000

Health Research Policy & Systems; 08/05/2025
(AN 187140501); ISSN: 14784505
CINAHL Complete

Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa: Project intervention tools development and evaluation procedures.

Fri, 01 Aug 2025 04:00:00 +0000

Journal of Stroke & Cerebrovascular Diseases; 08/01/2025
(AN 186642993); ISSN: 10523057
CINAHL Complete

Balancing ethics and clinical need: The Japanese experience with preimplantation genetic testing for monogenic disease regulation and implementation.

Fri, 01 Aug 2025 04:00:00 +0000

Journal of Obstetrics & Gynaecology Research; 08/01/2025
Preimplantation genetic testing (PGT) has emerged as an important extension of assisted reproductive technologies. Alongside these technological advances, PGT has also generated substantial ethical and social debate, particularly regarding the sanctity of human life. Ethical perspectives are deeply context‐dependent and vary significantly across different backgrounds. The unique historical and social context of Japan necessitated careful ethical discussions as PGT was introduced. The Japan Society of Obstetrics and Gynecology (JSOG) provided official guidance under which PGT was implemented. With these technological advancements, reliable and highly accurate genetic analysis has become possible across a broad spectrum of pathogenic genotypes up to this stage. However, the most challenging issues have been the ethical debate surrounding indication criteria that prioritize severity. "Severity" is a highly nuanced and multifaceted concept, making the establishment of a clear, universally applicable standard inherently difficult. JSOG's first ethical approval for PGT in Duchenne muscular dystrophy cases led to the birth of the first child conceived via PGT at Keio University Hospital in 2004 in Japan, followed by over 13 years of research and ongoing discussion that addressed issues such as disease definition, severity criteria, scope of genetic analysis, disclosure policies, and safety and accuracy concerns. However, for certain genetic disorders, determining the appropriateness of PGT solely based on genotype or the clinical course observed in affected family members can be challenging, such as triplet repeat diseases or mitochondrial diseases. Ethical debate must be seen not as an obstacle to progress, but as an ongoing process of reflective engagement, offering context‐dependent guidelines rather than absolute prohibitions. Within this delicate balance of complex debate, constructive engagement between ethics and scientific progress carries a profound responsibility to serve as a driving force in advancing the health and well‐being of humanity.
(AN 187572422); ISSN: 13418076
CINAHL Complete

Theological and Ethical Perspectives on Gene Editing and the Sanctity of Life: Rare Genetic Diseases in the Philippines as a Model.

Fri, 01 Aug 2025 04:00:00 +0000

Journal of Religion & Health; 08/01/2025
This paper examines the interplay between the sacredness of life and gene editing in the context of rare genetic diseases. Rare genetic disorders caused by gene mutations often come with limited treatment options. Gene editing techniques present a promising solution by targeting and repairing defective genes. The discussion begins with an overview of the science behind gene editing and its potential applications in treating rare diseases, highlighting three specific genetic conditions affecting Filipinos. It then explores the ethical and theological dimensions of gene editing, emphasizing the Imago Dei doctrine, which underscores human dignity and moral responsibility as well as ethical principles in light of Christian virtues. A comparative analysis between therapeutic somatic gene editing and germline editing is highlighted in the discussions. Using the See-Judge-Act framework, the paper examines the potential of gene editing through the lens of Catholic Church's teachings on human dignity and offers practical insights for applying the theological and ethical considerations in addressing the therapeutic options for rare genetic diseases righteously.
(AN 187433914); ISSN: 00224197
CINAHL Complete

Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.

Sat, 19 Jul 2025 04:00:00 +0000

BMC Medical Ethics; 07/19/2025
(AN 186782224); ISSN: 14726939
CINAHL Complete

Strengthening ethical oversight in genomics and biobanking: a retrospective analysis of research practices in Zimbabwe.

Wed, 09 Jul 2025 04:00:00 +0000

BMC Medical Ethics; 07/09/2025
(AN 186488641); ISSN: 14726939
CINAHL Complete

Correction to Teaching of Medical Ethics Regarding Military, Genetic, Reproductive, Student Ethics, and the Holocaust at the Uniformed Services University of the Health Sciences (USUHS) During Its First Fifty Years Free.

Tue, 01 Jul 2025 04:00:00 +0000

Military Medicine; 07/01/2025
(AN 186419007); ISSN: 00264075
CINAHL Complete

Genetic counselors outside of the genetics clinic: Roles, practices, and ethico‐legal implications in light of lagging legal recognition across Canada.

Sun, 01 Jun 2025 04:00:00 +0000

Journal of Genetic Counseling; 06/01/2025
Advances in medical genetics have led to a significant increase in demand for genetic services and expertise across almost all medical specialties. Genetic counselors (GCs) in Canada play key roles in genetic services both within and outside of the Genetics Clinic, while not being regulated or legally recognized as healthcare professionals (HCPs) in most provinces. Understanding whether GCs outside of the "traditional" Genetics Clinic influence patient care, their level of professional autonomy and supervisory structure is, therefore, important. In this study, we explore the current landscape of GC practice outside of the Genetics Clinic by describing positions, determining the professional scope of practice, as defined by the Canadian Association of Genetic Counselors (CAGC) and Canadian Board of Genetic Counseling (CBGC) core competencies, and by elucidating associated ethico‐legal implications. An online survey was developed and distributed to GCs working with patient‐related data in Canada in positions outside of the Genetics Clinic through the CAGC ListServ and accessed between March 5 and April 9, 2021. Thirty GCs were included in the study, with 16/30 in public healthcare system positions. Most respondents held roles with direct (11/30) and indirect (14/30) impact on patient care and management, and the majority reported performing their primary roles with minimal supervision (56%) or complete independence (36%). Most roles (22/25) elicited by respondents were considered to be within the GC scope of practice, except for administrative tasks and special projects. GCs were the only genetics‐trained professional(s) in 8/30 of respondents' workplaces. The results of the current study support the value of GCs translatable skillset in positions beyond the Genetics Clinic, and outline ethico‐legal implications for GCs, regulated HCPs, patients, and health institutions in the absence of legal recognition, including medical‐legal liability and title protection. This study provides evidence in support of regulation of GCs as HCPs.
(AN 186226399); ISSN: 10597700
CINAHL Complete

Genetic counselors providing care to inpatients experience moral distress.

Sun, 01 Jun 2025 04:00:00 +0000

Journal of Genetic Counseling; 06/01/2025
Moral distress is defined as a negative emotional response that occurs when healthcare professionals cannot carry out what they believe are ethically appropriate actions because of constraints or barriers. The prevalence of moral distress is high among inpatient healthcare providers and has been previously studied in genetic counselors (GCs). It has never been studied, however, among GCs with inpatient roles. This mixed methods study comprised a survey to assess moral distress using the previously validated Measure of Moral Distress—Healthcare Professionals (MMD‐HP), followed by semi‐structured interviews to further explore the prevalence and experience of moral distress and coping mechanisms to heal from moral distress. Twenty‐five GCs who provided inpatient care completed the survey, 10 completed interviews. The survey identified that most (60%; n = 15) GCs in this study were new to the inpatient role, with less than 3 years of experience. The most prevalent sources of moral distress on the MMD‐HP included watching patient care suffer because of poor provider continuity and feeling pressured to order or carry out orders for unnecessary/inappropriate tests. Themes from the interviews included: witnessing poor and inconsistent care, lack of time to provide care, pressure to obtain consent, support is needed to manage moral distress, and years of experience in the inpatient role alters the experience of moral distress. Talking with colleagues was the most common mechanism for healing from moral distress. Solutions to reducing moral distress included more administrative support, development of guidelines to promote consistent care, and provider education on the inpatient GC role and appropriate consent. Raising awareness of sources of moral distress among inpatient GCs is vital as the field of inpatient genetic counseling expands, as anticipatory guidance may be able to be provided to new inpatient GCs. Reducing moral distress among inpatient GCs is vital to retaining GCs in these roles.
(AN 186226432); ISSN: 10597700
CINAHL Complete

Genetic testing for Parkinson's disease in an underrepresented population: Knowledge, attitudes, and ethical considerations from a Malaysian perspective.

Sun, 01 Jun 2025 04:00:00 +0000

Journal of Genetic Counseling; 06/01/2025
Parkinson's disease (PD), an increasingly prevalent neurodegenerative disease worldwide, has been the focus of extensive genetics research in recent years. Genetic testing has emerged as a promising tool for early diagnosis, prognostication, and stratification of patients for potential disease‐modifying therapies. However, implementing genetic testing in clinical practice presents unique considerations that warrant exploration. This is especially important in low‐ and middle‐income countries (LMICs) like Malaysia, where the availability of testing is increasing but low genetic literacy and practical challenges complicate matters. This qualitative study explored the knowledge, attitudes, and perceptions of PD patients and caregivers regarding genetic testing, alongside issues faced by Malaysian healthcare professionals when considering genetic testing for patients. In‐depth interviews were conducted with 20 patients, 20 caregivers, and 16 healthcare professionals, and data were analyzed using reflexive thematic analysis. Analysis revealed limited PD genetic literacy among patients and caregivers concerning the genetic role in PD, highlighting knowledge gaps regarding PD‐specific genes and testing availability. Misconceptions surrounding PD causation and perceived limited utility of testing were prevalent. Expectations encompassed the role of testing in diagnosis, management, and prevention, while concerns centered around genetic information confidentiality, family implications, and affordability. Despite this, there was a considerable interest in genetic testing and counseling. Healthcare professionals highlighted concerns including proper disclosure of findings, the importance of genetic counseling, its broader implications for patients and their families, the risk of genetic discrimination, and practical barriers to testing. This study highlights the critical need for tailored genetic education for patients and families, providing a foundation for the development of locally relevant materials to improve PD genetic literacy and support decision‐making. As genetic testing becomes integrated into clinical practice, expanding training programs for healthcare professionals, implementing genetic protection policies, and increasing accessibility is crucial to ensure equitable access to testing and counseling in Malaysia and other underrepresented regions.
(AN 186226479); ISSN: 10597700
CINAHL Complete

Behavioral Genetics and Human Agency: How Selectively Deterministic Theories of Free Will Drive Unwarranted Opposition to Behavioral Genetic Research and Undermine Our Moral and Legal Conventions, Part I.

Sun, 01 Jun 2025 04:00:00 +0000

Twin Research & Human Genetics; 06/01/2025
(AN 186915989); ISSN: 18324274
CINAHL Complete

Ethical and Psychosocial Issues Associated with Genetic Testing for Hereditary Tumor Predisposition Syndromes.

Tue, 15 Apr 2025 04:00:00 +0000

Healthcare (2227-9032); 04/15/2025
(AN 184794018); ISSN: 22279032
CINAHL Complete

Narrative review on ethical and psychological issues raised by genetic and genomic testing in pediatric oncology care.

Tue, 01 Apr 2025 04:00:00 +0000

Journal of Genetic Counseling; 04/01/2025
In pediatric oncology, genetic and genomic tests are proposed throughout the care pathway for many reasons (e.g., cancer characterization, identification of the most appropriate treatment, patient selection for clinical trials, identification of tissue/organ donors, or risk of relapse prediction). Despite the many different approaches (somatic or germline testing, targeted gene or genome sequencing), the implicated individuals are confronted with situations that may intersect and that are interesting to compare. No study has identified and analyzed the available works on these new practices in pediatric oncology. The aim of this narrative literature review was to describe the ethical and psychological perspectives of children with cancer, parents, and healthcare professionals when genetic or genomic testing is proposed as part of the cancer management. Eighteen articles met the inclusion criteria and were comprehensively coded using MAXQDA. Their analysis showed that concerning the subjective implications of genetic and genomic testing, the areas of ambivalence (desire of treatment, desire for knowledge, uncertainty, and guilt) reported by patients and their parents seem to mirror the healthcare professionals' concerns. The ethical and psychological issues about predisposition testing, long discussed in the context of hereditary retinoblastoma and Li‐Fraumeni syndrome, represent a useful starting point for a wider discussion of a genetic and genomic testing pathway in pediatric oncology more broadly.
(AN 184767444); ISSN: 10597700
CINAHL Complete

Diagnosing a genetic disease in a donor-conceived child: case report and discussion of the ethical, legal, and practical issues.

Sat, 01 Mar 2025 05:00:00 +0000

Pediatric Nephrology; 03/01/2025
We describe the unexpected challenges pediatricians may experience when children conceived with assisted reproduction are diagnosed with a rare genetic condition. A local case series triggered a dialogue between many stakeholders with varied expertise. Indeed, diagnosing a genetic disease in a child conceived by embryo, egg, or sperm donation is becoming more common now that genetic testing and in vitro fertilization (IVF) are readily accessible. However, how and whether to share that information with other stakeholders in the gamete donation process has not been fully explored, and the clinical responsibilities of the treating clinician remain ill-defined. This work centers on a patient with a confirmed diagnosis of X-linked nephrogenic diabetes insipidus. Ultimately, we found the same AVPR2 mutation in two children from two families conceived by egg donation. It led to multigenerational cascade diagnoses in the family of the shared, anonymous egg donor. First, we review current genetic testing practices in gamete donation and third-party reproduction. Then, we provide an overview of relevant genomic, ethical, legal, and psychosocial considerations for sharing relevant genomic information. Finally, and to maximize the best interests of genetic relatives, we discuss how a pediatrician can play a role in the early disclosure of relevant clinical information to all stakeholders in the gamete donation process, starting with the fertility clinic. While these clinical cases are cast in a Canadian context, we submit that its important lessons generally apply to medical systems of nearly all developed countries, broadly defined.
(AN 182323581); ISSN: 0931041X
CINAHL Complete

Teaching of Medical Ethics Regarding Military, Genetic, Reproductive, Student Ethics, and the Holocaust at the Uniformed Services University of the Health Sciences (USUHS) During Its First Fifty Years.

Sat, 01 Mar 2025 05:00:00 +0000

Military Medicine; 03/01/2025
(AN 183483538); ISSN: 00264075
CINAHL Complete

Navigating the Ethical Landscape of Medical Genomics: An Interview with Dr. Françoise Baylis.

Sat, 01 Mar 2025 05:00:00 +0000

University of Toronto Medical Journal; 03/01/2025
(AN 184480694); ISSN: 08332207
CINAHL Complete

Beyond Individual Responsibility: Group Harms in Genomic (Data-Centric) Research Ethics Require Structural, Justice-Oriented Solutions.

Sat, 01 Feb 2025 05:00:00 +0000

American Journal of Bioethics; 02/01/2025
(AN 182607517); ISSN: 15265161
CINAHL Complete

The genomic promise of cancer as "not-yet-treatable" and the moral burden of "trying".

Sat, 01 Feb 2025 05:00:00 +0000

Social Science & Medicine; 02/01/2025
Based on fieldwork conducted in China from November 2018 to January 2020 on biomedical innovation with advanced therapies open to foreigners, in this paper I address the question of why parents of children with incurable cancer decide to access experimental treatment on the other side of the world. While work on the "political economy of hope" has already extensively researched the relation between biomedical technology and hope, I delve into other terrains. In this paper, I will discuss the role of "ontological hope" in the moral project of caring for a child with cancer. Drawing on the Anthropology of Ethics, I conclude that in the postgenomic era, when incurable cancers are recategorize as not-yet-treatable, parents' efforts to access experimental treatment highlight the complex moral work that parents must undergo to imagine a future good life despite their irreparable loss. • Accessing experimental treatment can be understood as part of a moral project. • The moral experience of personal misfortune offers new insights on hope and biomedical innovation. • Access to experimental technology might avoid the moral catastrophe of not having done enough.
(AN 182903802); ISSN: 02779536
CINAHL Complete

Transfer of embryos with positive PGT‐M results: Genetic Counselors' perspectives and ethical considerations.

Sat, 01 Feb 2025 05:00:00 +0000

Journal of Genetic Counseling; 02/01/2025
Increasing numbers of fertility patients use preimplantation genetic testing for monogenic conditions (PGT‐M) during in vitro fertilization (IVF). While PGT‐M is primarily used to avoid implanting embryos with a monogenic condition, patients can request to transfer an embryo with the monogenic condition (positive embryo transfer), especially in cases where an IVF cycle results in no unaffected embryos. Transferring embryos with known disease‐causing variants raises ethical concerns. There is limited understanding about how stakeholders in the assisted reproductive technology (ART) field approach these issues. In this study, genetic counselors were sent a survey to gather insight into their views about transferring embryos with different monogenic conditions. N = 99 genetic counselors completed the survey, 22 of whom had experience with patients requesting or deciding to transfer an embryo with a monogenic condition (positive embryo transfer experience). Most participants, including those with positive embryo transfer experience, were supportive of positive embryo transfer, regardless of the genetic condition. While participating genetic counselors were largely supportive of all patient decisions, they reported increased moral uneasiness around transferring embryos with life‐limiting monogenic conditions, such as Huntington's disease. Further investigation into the experiences of genetic counselors who have experienced positive embryo transfer requests in practice can help delineate the ethical questions that ART providers face in this context and clarify how genetic counselors can contribute to establishing guidelines in the ART field.
(AN 183983321); ISSN: 10597700
CINAHL Complete

Un-Knowing the Embryo: The Moral Labor of Doing Preimplantation Genetic Testing in France.

Sat, 01 Feb 2025 05:00:00 +0000

Medical Anthropology; 02/01/2025
(AN 184193830); ISSN: 01459740
CINAHL Complete

From the Perspective of the Child: Ethical Considerations for the Implementation of Genomic Sequencing into Neonatal and Pediatric Care.

Wed, 01 Jan 2025 05:00:00 +0000

Clinical Chemistry; 01/01/2025
(AN 182092238); ISSN: 00099147
CINAHL Complete

Genomics and Biodiversity: Applications and Ethical Considerations for Climate‐Just Conservation.

Mon, 02 Dec 2024 05:00:00 +0000

Hastings Center Report; 12/02/2024
Genomics holds significant potential for conservationists, offering tools to monitor species risks, enhance conservation strategies, envision biodiverse futures, and advance climate justice. However, integrating genomics into conservation requires careful consideration of its impacts on biodiversity, the diversity of scientific researchers, and governance strategies for data usage. These factors must be balanced with the varied interests of affected communities and environmental concerns. We argue that conservationists should engage with diverse communities, particularly those historically marginalized and most vulnerable to climate change. This inclusive approach can ensure that genomic technologies are applied ethically and effectively, aligning conservation efforts with broader social and environmental justice goals. Engaging diverse stakeholders will help guide responsible genomic integration, fostering equitable and sustainable conservation outcomes.
(AN 181804645); ISSN: 00930334
CINAHL Complete

The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical Complementarity for Just Research.

Mon, 02 Dec 2024 05:00:00 +0000

Hastings Center Report; 12/02/2024
Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations—including Indigenous Peoples—that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP‐based framework can complement the individual‐focused national standard for research oversight represented by the Belmont principles, thereby better protecting Indigenous Peoples' rights and interests in genomic data.
(AN 181804646); ISSN: 00930334
Health Business Elite

Ethical challenges of conducting and reviewing human genomics research in Malaysia: An exploratory study.

Sun, 01 Dec 2024 05:00:00 +0000

Developing World Bioethics; 12/01/2024
(AN 181516279); ISSN: 14718731
CINAHL Complete

Ethical issues in genomics research in persons with Alzheimer’s Disease/Alzheimer’s Disease-related dementia (AD/ADRD): a systematic review.

Mon, 25 Nov 2024 05:00:00 +0000

BMC Medical Ethics; 11/25/2024
(AN 181244364); ISSN: 14726939
CINAHL Complete

Neonatal bioethics, AI, and genomics.

Fri, 01 Nov 2024 04:00:00 +0000

Early Human Development; 11/01/2024
(AN 180773675); ISSN: 03783782
CINAHL Complete

Use of preimplantation genetic testing for monogenic adult-onset conditions: an Ethics Committee opinion.

Tue, 01 Oct 2024 04:00:00 +0000

Fertility & Sterility; 10/01/2024
(AN 179972209); ISSN: 00150282
CINAHL Complete

Egg freezing, genetic relatedness, and motherhood: A binational empirical bioethical investigation of women's views.

Sun, 01 Sep 2024 04:00:00 +0000

Bioethics; 09/01/2024
Genetic relatedness figures heavily in contemporary ethical debates on egg freezing, although the arguments lack empirical‐based evidence. Rather than adding another theoretical view on the moral relevance of genetic connections, this paper instead proposes an empirically grounded perspective based on two independent qualitative interview‐based studies conducted in Belgium and France. Three themes emerge from our empirical data: (1) prioritizing family building; (2) centering the gestational experience of motherhood; and (3) identifying the complexities and limitations of adoption. These themes suggest that the relationship between egg freezing, genetics, biological motherhood, and adoption is highly complex and less straightforward than what is often assumed in the egg freezing debate. Our study provides more detailed insights into women's ambivalent experiences regarding those reproductive options. We discuss the ethical implications of our empirical findings and hold that pursuing genetic desire is not necessarily the main moral reason why women freeze their eggs.
(AN 178814325); ISSN: 02699702
CINAHL Complete

A contextual integrity approach to genomic information: what bioethics can learn from big data ethics.

Sun, 01 Sep 2024 04:00:00 +0000

Medicine, Health Care & Philosophy; 09/01/2024
(AN 178914251); ISSN: 13867423
CINAHL Complete

Addressing Barriers and Facilitators to African Americans' and Hispanics' Participation in Clinical and Genomic Research Through a Bioethical Sensitive Video.

Thu, 01 Aug 2024 04:00:00 +0000

Journal of Cancer Education; 08/01/2024
(AN 178230326); ISSN: 08858195
CINAHL Complete

Dermatologists' ethical obligations to patients and their family members regarding genetic testing.

Thu, 01 Aug 2024 04:00:00 +0000

Journal of the American Academy of Dermatology; 08/01/2024
(AN 178357373); ISSN: 01909622
CINAHL Complete

Ethical Reflections on Preimplantation Genetic Diagnoses.

Thu, 01 Aug 2024 04:00:00 +0000

Journal of Nursing; 08/01/2024
With fertility rates at an all-time low, children have become even more the 'treasures' of their families. Progress in genetic selection technology has made preimplantation genetic diagnosis an increasingly common practice in clinics. However, the practice of purposively selecting genes for future children remains controversial. In this article, the process of preimplantation genetic diagnosis is introduced and related philosophical and social perspectives are reviewed. Finally, the ethics related to this practice are discussed in the contexts of obligation theory, utility theory, and four ethical principles. The authors hope this article sheds light on the diverse perspectives used to consider and discuss the ethical issues surrounding gene selection and, importantly, helps nurses provide care grounded in ethics and humanity in ethically uncertain circumstances.
(AN 178661534); ISSN: 0047262X
CINAHL Complete

From CRISPR to Conscience: Ethical Dilemmas in Gene Editing and Genetic Selection.

Thu, 01 Aug 2024 04:00:00 +0000

American Journal of Bioethics; 08/01/2024
(AN 179108532); ISSN: 15265161
CINAHL Complete

Free genetic testing is not free of clinical and ethical considerations.

Mon, 29 Jul 2024 04:00:00 +0000

Canadian Medical Association Journal (CMAJ); 07/29/2024
(AN 178679854)
CINAHL Complete

Barriers to Ethical Informed Consent with Hereditary Cancer Genetic Testing.

Mon, 01 Jul 2024 04:00:00 +0000

Medical Ethics Advisor; 07/01/2024
(AN 178133506); ISSN: 08860653
CINAHL Complete

Ethical issues and dilemmas of assisted reproduction-Women's age limit and third party genetic material.

Mon, 01 Jul 2024 04:00:00 +0000

Rostrum of Asclepius / Vima tou Asklipiou; 07/01/2024
Introduction: Infertility is one of the main sources of concern for global health and although the evolving medical technology with the method of in vitro fertilization and the use of third party genetic material can be effective, there are ethical concerns about its use. Purpose: This article analyzes the ethical concerns generally surrounding the use of new technology methods for medically assisted reproduction. In addition, it refers to ethical dilemmas regarding the use of third-party genetic material, such as gametes or fertilized eggs, and the legal establishment of the prospective donor regarding whether or not to disclose his identity in case of selection of his genetic material for procreation, issues that need thorough analysis. Material and Method: An English language literature review was done on Scopus, Pubmed and Google Scholar international databases became by using the below keywords. Results: Ethical concerns about medically assisted reproduction, the possibility of extending the age limit for women to have children and the use of third-party genetic material, should on the one hand be adequately examined in all their dimensions and on the other hand be systematically revised due to continuous scientific and technological developments. Conclusions: Legislative changes, for fertilization with assisted reproduction or the transfer of third-party genetic material, are necessary at the global level and the moral dilemmas are manifold.
(AN 179704429); ISSN: 11094486
CINAHL Complete

Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

Fri, 07 Jun 2024 04:00:00 +0000

BMC Medical Ethics; 06/07/2024
(AN 177743454); ISSN: 14726939
CINAHL Complete

Ethics considerations for precision medicine research and genetic testing in low- and middle-income countries.

Sat, 01 Jun 2024 04:00:00 +0000

Eastern Mediterranean Health Journal; 06/01/2024
Background: Genetic data transfer within multicentre clinical trials conducted in low- and middle-income countries is common and must be communicated to study participants as part of ethical requirements. Aims: To analyse ethics practices in precision medicine research in low- and middle-income countries and make useful recommendations. Methods: We conducted a narrative review of published literature and existing ethics frameworks regarding underrepresentation of low- and middle-income countries in genomic databases, informed consent and data security discussions, as well as the potential for exploitation and limited access to benefits. Results: The findings highlight the need for increased diversity in research participation, robust ethical frameworks, and knowledge sharing between developed and developing countries. The findings show that strengthening national research ethics committees and fostering collaboration can help low- and middle-income countries in addressing unique challenges and harnessing the potential of precision medicine while ensuring ethical conduct and equitable access for all. Our review emphasizes the importance of ethical considerations in precision medicine research to ensure that its benefits reach all affected populations, promoting a more just and more equitable healthcare future. Conclusion: There is a need to ensure that research participants are accorded the rights, whether in the ownership of their samples or the right to know what type of genetic studies have been conducted on their samples. It is important to have binding agreements that will allow clinical trial participants to access drugs that proof effective based on the trials they participated in.
(AN 178493997); ISSN: 10203397
CINAHL Complete

MOVING GENOMICS INTO THE CLINIC: PLATFORMS FOR IMPLEMENTING CLINICAL GENOMIC DATA-SHARING IN WAYS THAT ADDRESS ETHICAL, LEGAL AND SOCIAL IMPLICATIONS.

Sat, 01 Jun 2024 04:00:00 +0000

Journal of Law & Medicine; 06/01/2024
(AN 180415132); ISSN: 1320159X
CINAHL Complete

Blurring Boundaries: A Proposed Research Agenda for Ethical, Legal, Social, and Historical Studies at the Intersection of Infectious and Genetic Disease.

Sat, 01 Jun 2024 04:00:00 +0000

Journal of Law, Medicine & Ethics; 06/01/2024
Contemporary understanding of the mechanisms of disease increasingly points to examples of "genetic diseases" with an infectious component and of "infectious diseases" with a genetic component. Such blurred boundaries generate ethical, legal, and social issues and highlight historical contexts that must be examined when incorporating host genomic information into the prevention, outbreak control, and treatment of infectious diseases.
(AN 180411203); ISSN: 10731105
CINAHL Complete

A Proposed Research Agenda for Ethical, Legal, Social, and Historical Studies at the Intersection of Infectious and Genetic Disease.

Sat, 01 Jun 2024 04:00:00 +0000

Journal of Law, Medicine & Ethics; 06/01/2024
Over the past two decades there has been a rapid expansion in our understanding of how human genetic variability impacts susceptibility and severity of disease. Through applications of genome-wide association studies, genome and exome sequencing, researchers have made thousands of discoveries of genetic variants that impact risk of common and rare disorders affecting millions of people. Although these techniques have been primarily applied to highly prevalent chronic disorders such as diabetes1 and cardiovascular disease2, infectious diseases have proven to not be immune to genome-wide association, with studies of Tuberculosis3, HIV4 and SARS-CoV25, to name but a few, identifying host susceptibility loci across the genome. Unlike non-communicable diseases, infectious diseases have the unique element of impacting not only the affected the host, but those who may be most vulnerable to acquiring the infection. Thus, genetic variants that impact one individual's susceptibility to and severity of an infection may also have broader implications to public health, as was brought into keen focus during the COVID-19 pandemic. Therefore, as we begin to apply the knowledge gained from genomic studies in the clinic or into policy, there are unique ethical, legal, and social implications (ELSI) at the intersection of infectious diseases and human genomics. In this issue of the Journal of Law, Medicine and Ethics , Jose et al attempt to address this need by proposing a research agenda for ELSI studies at what they term the "blurred boundaries" of infectious and genetic diseases.6
(AN 180411201); ISSN: 10731105
CINAHL Complete

Ethical concerns of direct-to-consumer genetic testing.

Wed, 01 May 2024 04:00:00 +0000

Journal of the American Academy of Dermatology; 05/01/2024
(AN 176561940); ISSN: 01909622
CINAHL Complete

Expanding Applications of CIinical Genetic Testing - Ethical Challenges.

Thu, 18 Apr 2024 04:00:00 +0000

New England Journal of Medicine; 04/18/2024
(AN 176876041); ISSN: 00284793
CINAHL Complete