ethique_genetics

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

Sat, 21 Jun 2025 08:22:09 +0000

Author Names: Shulman K.S.,Fishler Malone K.,Smith H.S.,Chaudhari B.P.,Wojcik M.H.

Database Source: Embase Weekly Updates

Journal Title: Seminars in Perinatology

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

Year: 2025

Issue:

Volume:

Abstract: Exome or genome sequencing (ES/GS) is increasingly used as the first-line test for postnatal diagnosis of rare genetic conditions, especially in intensive care units (ICUs). Early concerns regarding the use of broad genetic testing centered on the potential for psychosocial harm, particularly related to unexpected or uncertain findings. As the usage of ES/GS has grown and evolved, the ethical concerns initially raised have not borne out in empirical measurement of patient and family experience. We therefore review the use of diagnostic genomic sequencing in the neonatal intensive care unit with comparison to other standard diagnostic tests that have not elicited similar ethical questioning. We frame this landscape within the concept of genetic contextualism rather than exceptionalism and suggest that this approach may lead to a more productive future for applied genomic medicine, especially for sick neonates and infants in the NICU.<br/>Copyright © 2025 Elsevier Inc.

Ethics of disclosure of onset-predictive biomarker test results for genetic frontotemporal dementia in the research context

Sat, 21 Jun 2025 08:22:09 +0000

Author Names: Graafland C.H.,Donker Kaat L.,Richard E.,van Swieten J.C.,Seelaar H.,Bunnik E.M.

Database Source: Embase Weekly Updates

Journal Title: Alzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring

Article Title: Ethics of disclosure of onset-predictive biomarker test results for genetic frontotemporal dementia in the research context

Year: 2025

Issue: 2

Volume: 17

Abstract: Onset-predictive biomarker tests (OPBTs) for genetic frontotemporal dementia (FTD) may predict symptom onset in coming years. OPBT results could be used as inclusion criterion for clinical trials for FTD, but this requires disclosure of OPBT results to potential participants for informed consent. This creates a dilemma, as disclosure may be psychologically burdensome. Yet, individuals at risk of FTD may value OPBTs to relieve uncertainty and support planning for the future. This article provides an overview of considerations regarding disclosure using four themes (actionability, respect for autonomy and informed consent, psychological impact, social and societal impact), based on literature on return of individual research results and biomarker disclosure in Alzheimer's disease. Based on this, we argue that clinical validity and context of use are important considerations, and suggest that (1) counseling facilitates informed decision making, (2) clinical and psychological follow-up provides necessary support, and (3) impacts may be monitored in a pilot study. Highlights: Ethical considerations regarding disclosure of onset-predictive biomarker test (OPBT) results include actionability, respect for autonomy and informed consent, psychological impact, and social and societal impact. The weight of each consideration depends heavily on the clinical validity of the OPBT results and the context of use. OPBT result disclosure to individuals at risk of genetic frontotemporal dementia (FTD) for clinical trial recruitment seems ethically acceptable. We suggest embedding OPBT results disclosure in counseling, follow-up, and a pilot study on impacts of OPBT results disclosure.<br/>Copyright © 2025 The Author(s). Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.

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

The Ethics of Genetic Testing for Inherited Cancer-Predisposing Genes.

Fri, 01 Mar 2024 05:00:00 +0000

JADPRO: Journal of the Advanced Practitioner in Oncology; 03/01/2024
Once an individual has been identified as a carrier of an inherited cancer-predisposing gene or pathogenic germline variant (PGV), there are measures that have been proven to prevent and diagnose the associated cancers at an earlier, more curable stage. Consequently, patients who are offered and undergo testing are afforded opportunities and health-care information that profoundly affect their lives and the lives of their family members who choose to be tested as well. For years, the debate over the controversial topic of whether all patients should be offered germline testing for cancer-predisposing PGVs centered around questions of the analytical sensitivity of the assays (i.e., the ability of the test to correctly identify those who carry a PGV), legal implications for those identified as PGV carriers, cost to the health-care system, and the uncertain management implications of test results. Currently, the standard of care is to offer testing to individuals where the anticipated benefits of testing outweigh the harms. Here, the ethical question of whether all patients have the right to testing for PGVs is considered.
(AN 176522548); ISSN: 21500878
CINAHL Complete

"Are we not going too far?": Socio-ethical considerations of preimplantation genetic testing using polygenic risk scores according to healthcare professionals.

Thu, 15 Feb 2024 05:00:00 +0000

Social Science & Medicine; 02/15/2024
The recent introduction of polygenic risk scores within preimplantation genetic testing (PGT-P) has been met with many concerns. To get more insights into the perspectives of relevant stakeholders on the socio-ethical aspects of PGT-P, an interview study with 31 healthcare professionals involved in reproductive medicine and genetics in Europe and North-America was performed. Healthcare professionals in our study were concerned that PGT-P was going too far in terms of selection, with regards to both medical conditions and non-medical traits. Healthcare professionals were worried about the ethical 'slippery slope' of PGT-P, the increasing medicalization of reproductive health, the commercial context of PGT-P, and potential stigmatization and discrimination. There were also concerns that the availability and the 'technological imperative' of PGT-P could lead to pressure and a sense of responsibility for parents to use PGT-P. Additionally, it could cause new anxieties about the child's health before the child has even been born. Since PGT-P provides polygenic risk scores before birth, the autonomy of the child has to be considered. These socio-ethical concerns heighten existing debates regarding reproductive genetic technologies and show that the specifics of PGT-P make this screening option especially ethically controversial. • Introduction of polygenic risk scores in preimplantation genetic testing. • Healthcare professionals concerned about socio-ethical implications. • Associated with 'slippery slope', going too far, discrimination and stigmatization. • Increased sense of medicalization and commercialization of reproduction and health. • Worries about effects on prospective parents and on the future child's autonomy.
(AN 175301018); ISSN: 02779536
CINAHL Complete

Ethical considerations for biobanking and use of genomics data in Africa: a narrative review.

Tue, 05 Dec 2023 05:00:00 +0000

BMC Medical Ethics; 12/05/2023
(AN 174011990); ISSN: 14726939
CINAHL Complete

Ethical Guidance for Autism Genomics Research.

Fri, 01 Dec 2023 05:00:00 +0000

Medical Ethics Advisor; 12/01/2023
The article focuses on the inclusion of community members in ethics committees, a practice that has been suggested by leaders in the field and gained renewed attention during the COVID-19 pandemic. It mentions Trevor M. Bibler, the director of clinical ethics consultation services at Houston Methodist Hospital, highlights the importance of accurate community representation and outlines the committee's efforts to recruit diverse community members.
(AN 173886915); ISSN: 08860653
CINAHL Complete

Knowledge Gap on Direct-to-Consumer Genomic Testing Is an Ethical Worry.

Fri, 01 Dec 2023 05:00:00 +0000

Medical Ethics Advisor; 12/01/2023
The article focuses on the ethical implications of the increasing popularity of direct-to-consumer (DTC) genomic testing, highlighting the need for greater awareness among the general public and healthcare providers about the clinical and ethical consequences. It authors emphasize the challenges arising from patients' reliance on DTC testing, leading to confusion and ethical concerns.
(AN 173886918); ISSN: 08860653
CINAHL Complete

Clinically Indicated Genomic Sequencing of Children in Foster Care: Legal and Ethical Issues.

Wed, 01 Nov 2023 04:00:00 +0000

Journal of Pediatrics; 11/01/2023
(AN 173490478); ISSN: 00223476
CINAHL Complete

Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care.

Sun, 01 Oct 2023 04:00:00 +0000

Journal of Pediatrics; 10/01/2023
(AN 172293217); ISSN: 00223476
CINAHL Complete

Ethical Approaches to Informed Consent for Genetic Testing.

Fri, 01 Sep 2023 04:00:00 +0000

Medical Ethics Advisor; 09/01/2023
The article focuses on establishing an ethical framework for informed consent in genetic testing, aiming to identify essential concepts that should be included in the informed consent process. It mentions an expert consensus process identified core concepts such as voluntary testing, understanding the purpose and potential results of the test, potential impact on prognosis and management, familial implications, limitations of the test, and potential for genetic discrimination.
(AN 170897407); ISSN: 08860653
CINAHL Complete

Ethics and the Role of Nursing in Genetics.

Fri, 01 Sep 2023 04:00:00 +0000

South Carolina Nurse; 09/01/2023
(AN 172334646); ISSN: 10467394
CINAHL Complete

Age-Based Genomic Screening during Childhood: Ethical and Practical Considerations in Public Health Genomics Implementation.

Fri, 01 Sep 2023 04:00:00 +0000

International Journal of Neonatal Screening (IJNS); 09/01/2023
(AN 172395350); ISSN: 2409515X
CINAHL Complete

A Scoping Review: Do instruments measuring genomic competence in nursing incorporate ethics?

Tue, 01 Aug 2023 04:00:00 +0000

Nursing Open; 08/01/2023
(AN 164877873); ISSN: 20541058
CINAHL Complete

Direct-to-Consumer Genomic Testing Through an Ethics Lens: Oncology Nursing Considerations.

Tue, 01 Aug 2023 04:00:00 +0000

Clinical Journal of Oncology Nursing; 08/01/2023
BACKGROUND: The use of direct-to-consumer genomic testing (DTCGT) is increasing, but this testing may not be comprehensive and may lack clinical validity and utility. The ethical constructs of beneficence, nonmaleficence, justice, and autonomy provide a framework for coordinating the care of patients and their families. OBJECTIVES: This article provides an overview of the DTCGT process and reviews the ethical implications that affect clinical care. METHODS: A review of the literature was conducted using the following key words: genetics/ genomics and direct-to-consumer testing. Common themes were identified, including test types, regulatory standards, marketing practices, ethics, privacy, and nursing implications. FINDINGS: An increased awareness of the clinical and ethical consequences of DTCGT is needed among healthcare providers and the general population. Oncology nurses can assist patients in navigating the field of genomics through consistent and comprehensive risk assessment, patient education about the risks and benefits of DTCGT, and referral to genomics professionals when appropriate.
(AN 166919674); ISSN: 10921095
CINAHL Complete

The Technological Entrainment of Moral Issues: The Case of Genomic Data Markets.

Tue, 01 Aug 2023 04:00:00 +0000

Academy of Management Journal; 08/01/2023
This research considers the role of technology in shaping the moral foundations of emerging digital markets. Through an inductive process study, we examine the development of the market for genomic (DNA) data—an emergent digital market plagued by moral conflicts over privacy and ownership. Drawing on interview, archival, and observational data, we analyze how rules for exchanging genomic data emerged, and how entrepreneurial technology-development moves influenced those rules. Our findings reveal a four-step process, which we call the technological entrainment of moral issues, involving the progressive synchronization of framings, technical policies, technologies (software), exchange platforms, and market participant behaviors. This process baked particular moral stances on privacy and ownership into technological designs, which then dictated the rules market participants were required to follow to engage in exchange. We conclude that when markets are digital, technology processes central to exchange end up controlling many moral aspects of exchange. Our study contributes to theories of morally contentious markets and cultural or institutional entrepreneurship by illuminating how those theories can incorporate material (not only symbolic) aspects of technology processes and better explain the emerging moral order within the rapidly expanding realm of digital markets.
(AN 169940898); ISSN: 00014273
Health Business Elite

Navigating the Ethical Dilemmas Associated With Genomic Sequencing of the Newborn.

Tue, 01 Aug 2023 04:00:00 +0000

Clinical Therapeutics; 08/01/2023
(AN 171313753); ISSN: 01492918
CINAHL Complete

Ethical Considerations in Clinical Trials for Rare Genetic Diseases: The Case of Huntington's Disease.

Sat, 01 Jul 2023 04:00:00 +0000

American Journal of Bioethics; 07/01/2023
The article focuses on the intersectionality of health disparities in research and clinical care for rare diseases, with a specific emphasis on Huntington's Disease (HD). Topics include the underdiagnosis and limited access to neurologic care for racial and ethnic minority groups with Huntington's Disease, the historical injustice in the discovery of the genetic mutation associated with HD in Venezuela, and equitable access in drug development for rare diseases like HD.
(AN 164479107); ISSN: 15265161
CINAHL Complete

Ethical, Legal, and Social Implications of Genomics Research: Implications for Building a More Racially Diverse Bioethics Workforce.

Sat, 01 Jul 2023 04:00:00 +0000

American Journal of Bioethics; 07/01/2023
The article focuses on the need for a deeper analysis of racial justice in the field of bioethics, particularly in the context of genomics research and its implications for underserved communities, such as those in the Deep South.
(AN 164479115); ISSN: 15265161
CINAHL Complete