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Genetics and ethics

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https://www.readbyqxmd.com/read/28932650/gene-editing-gene-therapy-and-cell-xenotransplantation-cell-transplantation-across-species
#1
REVIEW
Nizar I Mourad, Pierre Gianello
PURPOSE OF REVIEW: Cell xenotransplantation has the potential to provide a safe, ethically acceptable, unlimited source for cell replacement therapies. This review focuses on genetic modification strategies aimed to overcome remaining hurdles standing in the way of clinical porcine islet transplantation and to develop neural cell xenotransplantation. RECENT FINDINGS: In addition to previously described genetic modifications aimed to mitigate hyperacute rejection, instant blood-mediated inflammatory reaction, and cell-mediated rejection, new data showing the possibility of increasing porcine islet insulin secretion by transgenesis is an interesting addition to the array of genetically modified pigs available for xenotransplantation...
2017: Current Transplantation Reports
https://www.readbyqxmd.com/read/28929852/the-ethics-of-genome-editing-in-the-clinic-a-dose-of-realism-for-healthcare-leaders
#2
Tania Bubela, Yael Mansour, Dianne Nicol
Genome editing technologies promise therapeutic advances for genetic diseases. We discuss the ethical and societal issues raised by these technologies, including their use in preclinical research, their potential to address mutations in somatic cells, and their potential to make germ line alterations that may be passed to subsequent generations. We call for a proportionate response from health leaders based on a realistic assessment of benefits, risks, and timelines for clinical translation.
May 2017: Healthcare Management Forum
https://www.readbyqxmd.com/read/28925273/-current-trends-in-gamete-donation-psychosocial-and-ethical-issues
#3
T Rumpíková, I Oborná, H Konečná
OBJECTIVE: To overview contemporary knowledge of legal and psychosocial rules in gamete donation. Previously, anonymous donation was preferred and recommended by experts but currently, with respect to the right to know the genetic origin of individuals, the relation to donor anonymity was reconsidered in many countries. There is a growing tendency to introduce the open identity system in gamete donation. Such system may guarantee that the child born after gamete donation may have receive the identification data of the donor of gametes...
2017: Ceská Gynekologie
https://www.readbyqxmd.com/read/28921376/legal-issues-in-governing-genetic-biobanks-the-italian-framework-as-a-case-study-for-the-implications-for-citizen-s-health-through-public-private-initiatives
#4
Cinzia Piciocchi, Rossana Ducato, Lucia Martinelli, Silvia Perra, Marta Tomasi, Carla Zuddas, Deborah Mascalzoni
This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance of genetic resources in the context of genetic biobanks in Italy is discussed, as an example of the stratification of different inputs and rules: EU law, national law, orders made by authorities and soft law, which need to be integrated with ethical principles, technological strategies and solutions. After providing an overview of the Italian legal regulation of genetic data processing, it considers the fate of genetic material and IP rights in the event of a biobank's insolvency...
September 18, 2017: Journal of Community Genetics
https://www.readbyqxmd.com/read/28916928/newborn-screening-in-the-era-of-precision-medicine
#5
Lan Yang, Jiajia Chen, Bairong Shen
As newborn screening success stories gained general confirmation during the past 50 years, scientists quickly discovered diagnostic tests for a host of genetic disorders that could be treated at birth. Outstanding progress in sequencing technologies over the last two decades has made it possible to comprehensively profile newborn screening (NBS) and identify clinically relevant genomic alterations. With the rapid developments in whole-genome sequencing (WGS) and whole-exome sequencing (WES) recently, we can detect newborns at the genomic level and be able to direct the appropriate diagnosis to the different individuals at the appropriate time, which is also encompassed in the concept of precision medicine...
2017: Advances in Experimental Medicine and Biology
https://www.readbyqxmd.com/read/28905883/acceptable-applications-of-preimplantation-genetic-diagnosis-pgd-among-israeli-pgd-users
#6
Shachar Zuckerman, David A Zeevi, Sigal Gooldin, Gheona Altarescu
The use of PGD technology to select against genetic disorders and traits is increasing. Although PGD may eliminate some of the obstacles related to conservative options of prenatal diagnosis, it can raise personal, social and moral questions. Ethical issues concerning the justified uses of PGD are a subject of ongoing debate among medical and bioethical communities. Although attitudes toward the acceptable uses of PGD were evaluated among population groups worldwide, bioethics councils were criticized for ignoring public perspectives...
October 2017: European Journal of Human Genetics: EJHG
https://www.readbyqxmd.com/read/28904010/vitamin-d-supplementation-to-palliative-cancer-patients-protocol-of-a-double-blind-randomised-controlled-trial-palliative-d
#7
Maria Helde-Frankling, Jenny Bergqvist, Caritha Klasson, Marie Nordström, Jonas Höijer, Peter Bergman, Linda Björkhem-Bergman
BACKGROUND: According to a small pilot study on palliative cancer patients at our ward, vitamin D supplementation had beneficial effects on pain (measured as opioid consumption), infections and quality of life (QoL) without having any significant side effects. OBJECTIVE: The primary objective of the 'Palliative-D' study is to test the hypothesis that vitamin D supplementation for 12 weeks reduces opioid consumption. The secondary objectives are to study if reduction of antibiotic consumption and fatigue as well as improvement in QoL assessments can be observed...
September 13, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28903733/increasing-confidence-and-changing-behaviors-in-primary-care-providers-engaged-in-genetic-counselling
#8
Michael S Wilkes, Frank C Day, Tonya L Fancher, Haley McDermott, Erik Lehman, Robert A Bell, Michael J Green
BACKGROUND: Screening and counseling for genetic conditions is an increasingly important part of primary care practice, particularly given the paucity of genetic counselors in the United States. However, primary care physicians (PCPs) often have an inadequate understanding of evidence-based screening; communication approaches that encourage shared decision-making; ethical, legal, and social implication (ELSI) issues related to screening for genetic mutations; and the basics of clinical genetics...
September 13, 2017: BMC Medical Education
https://www.readbyqxmd.com/read/28902054/ethical-issues-with-genetic-testing-for-tay-sachs
#9
Tricia Clayton
Several genetic disorders are specific to Jewish heritage; one of the most devastating is Tay-Sachs disease.Tay-Sachs is a fatal hereditary disease, causing progressive neurological problems for which there is no cure. Ethical issues surrounding genetic testing for Tay-Sachs within the Jewish community continue to be complex and multifaceted. A perspective of Tay-Sachs, using rights-based ethics and virtue ethics as a theoretical framework, is explored.
October 2017: Journal of Christian Nursing: a Quarterly Publication of Nurses Christian Fellowship
https://www.readbyqxmd.com/read/28890449/history-morals-and-medicine
#10
Jonathan D Moreno
This essay provides a rational reconstruction of the author's genetically inscribed inclination to do normative ethics with an historical bent and offers some reflections on the value of historical thinking for bioethics.
2017: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/28885275/the-ethics-of-creating-genetically-modified-children-using-genome-editing
#11
Tetsuya Ishii
PURPOSE OF REVIEW: To review the recent ethical, legal, and social issues surrounding human reproduction involving germline genome editing. RECENT FINDINGS: Genome editing techniques, such as CRISPR/Cas9, have facilitated genetic modification in human embryos. The most likely purpose of germline genome editing is the prevention of serious genetic disease in offspring. However, complex issues still remain, including irremediable risks to fetuses and future generations, the role of women, the availability of alternatives, long-term follow-up, health insurance coverage, misuse for human enhancement, and the potential effects on adoption...
September 6, 2017: Current Opinion in Endocrinology, Diabetes, and Obesity
https://www.readbyqxmd.com/read/28879860/ethical-issues-regarding-crispr-mediated-genome-editing
#12
Zabta Khan Shinwari, Faouzia Tanveer, Ali Talha Khalil
CRISPR-Cas9 has emerged as a simple, precise and most rapid genome editing technology. With a number of promising applications ranging from agriculture and environment to clinical therapeutics, it is greatly transforming the field of molecular biology. However, there are certain ethical, moral and safety concerns related to the attractive applications of this technique. The most contentious issues concerning human germline modifications are the challenges to human safety and morality such as risk of unforeseen, undesirable effects in clinical applications particularly to correct or prevent genetic diseases, matter of informed consent and the risk of exploitation for eugenics...
September 7, 2017: Current Issues in Molecular Biology
https://www.readbyqxmd.com/read/28878990/human-altruism-evolution-and-moral-philosophy
#13
William J FitzPatrick
This paper has two central aims. The first is to explore philosophical complications that arise when we move from (i) explaining the evolutionary origins of genetically influenced traits associated with human cooperation and altruism, to (ii) explaining present manifestations of human thought, feeling and behaviour involving cooperation and altruism. While the former need only appeal to causal factors accessible to scientific inquiry, the latter must engage also with a distinctive form of explanation, i.e. reason-giving explanation, which in turn raises important philosophical questions, the answers to which will affect the nature of the ultimate explanations of our moral beliefs and related actions...
August 2017: Royal Society Open Science
https://www.readbyqxmd.com/read/28870775/ethical-challenges-in-hematopoietic-cell-transplantation-for-sickle-cell-disease-a-review
#14
REVIEW
Robert Sheppard Nickel, Naynesh R Kamani
Hematopoietic cell transplantation (HCT) using an HLA-identical sibling donor offers a very high likelihood of cure with good outcomes for patients with sickle cell disease (SCD), and alternative donor HCT for SCD is an area of active clinical research. HCT is thus potentially an option for a growing number of patients with SCD, but this expanded use of HCT has raised several ethical questions. Specifically, who is eligible for HCT, both in terms of disease severity and psychosocial factors? Should affected children with matched sibling donors be transplanted only when they have declared themselves as having significant symptomatology? In regards to donors, special ethical challenges include the use of pre-implantation genetic diagnosis to conceive an HLA-identical sibling...
September 1, 2017: Biology of Blood and Marrow Transplantation
https://www.readbyqxmd.com/read/28868846/personhood-and-moral-status-of-the-embryo-it-s-effect-on-validity-of-surrogacy-contract-revocation-according-to-shia-jurisprudence-perspective
#15
Saeid Nazari Tavakkoli
Background: One of the most controversial issues related to the human embryo is the determination of the moment when an embryo is considered a human being and acquires a moral status. Although personhood and moral status are frequently mentioned in medical ethics, they are considered interdisciplinary as concepts that shape the debate in medical law (fiqh) since their consequences are influential in the way which the parents and other individuals behave towards the embryo. MATERIALS AND METHODS: This analytical-descriptive research gathered relevant data in a literature search...
October 2017: International Journal of Fertility & Sterility
https://www.readbyqxmd.com/read/28858330/navigating-the-research-clinical-interface-in-genomic-medicine-analysis-from-the-cser-consortium
#16
Susan M Wolf, Laura M Amendola, Jonathan S Berg, Wendy K Chung, Ellen Wright Clayton, Robert C Green, Julie Harris-Wai, Gail E Henderson, Gail P Jarvik, Barbara A Koenig, Lisa Soleymani Lehmann, Amy L McGuire, Pearl O'Rourke, Carol Somkin, Benjamin S Wilfond, Wylie Burke
PurposeThe Clinical Sequencing Exploratory Research (CSER) Consortium encompasses nine National Institutes of Health-funded U-award projects investigating translation of genomic sequencing into clinical care. Previous literature has distinguished norms and rules governing research versus clinical care. This is the first study to explore how genomics investigators describe and navigate the research-clinical interface.MethodsA CSER working group developed a 22-item survey. All nine U-award projects participated...
August 31, 2017: Genetics in Medicine: Official Journal of the American College of Medical Genetics
https://www.readbyqxmd.com/read/28857844/the-ethical-challenges-of-uterus-transplantation
#17
Giuliano Testa, Liza Johannesson
PURPOSE OF REVIEW: As the techniques of uterus transplantation have evolved, culminating in a birth in 2014, the ethical debate has been enriched by several considerations. Uterus transplantation raises issues because of its unique features of being temporary, nonlifesaving, experimental, and expensive, with established alternatives. RECENT FINDINGS: Uterus transplantation entails risks for the recipient related to multiple surgeries and immunosuppression, yet studies have shown that women see infertility as a distressing element in their lives, justifying the risks...
August 28, 2017: Current Opinion in Organ Transplantation
https://www.readbyqxmd.com/read/28854718/single-fathers-by-choice-using-surrogacy-why-men-decide-to-have-a-child-as-a-single-parent
#18
Nicola Carone, Roberto Baiocco, Vittorio Lingiardi
STUDY QUESTION: Why do men decide to have a child by surrogacy as a single parent? SUMMARY ANSWER: Reasons included feeling that it was the right time (i.e. having 'worked through' concerns about single parenthood; career and financial stability; a fear of getting older; no longer wanting to wait for the 'right' relationship), external encouragement, a desire to reproduce and a fear of separation/divorce. WHAT IS KNOWN ALREADY: Because no research has been conducted on single fathers who used surrogacy, their characteristics, motivations and experiences are unknown...
September 1, 2017: Human Reproduction
https://www.readbyqxmd.com/read/28852560/substitute-consent-to-data-sharing-a-way-forward-for-international-dementia-research
#19
Adrian Thorogood, Constance Deschênes St-Pierre, Bartha Maria Knoppers
A deluge of genetic and health-related data is being generated about patients with dementia. International sharing of these data accelerates dementia research. Seeking consent to data sharing is a challenge for dementia research where patients have lost or risk losing legal capacity. The laws of most countries enable substitute decision makers (SDMs) to consent on behalf of incapable adults to research participation. We compare regulatory frameworks governing capacity, research, and personal data protection across eight countries to determine when SDMs can consent to data sharing...
April 2017: Journal of Law and the Biosciences
https://www.readbyqxmd.com/read/28851791/organ-damage-in-sickle-cell-disease-study-ordiss-protocol-for-a-longitudinal-cohort-study-based-in-ghana
#20
Kofi A Anie, Vivian Paintsil, Ellis Owusu-Dabo, Daniel Ansong, Alex Osei-Akoto, Kwaku Ohene-Frempong, Kofi Aikins Amissah, Nicholas Addofoh, Ezekiel Bonwin Ackah, Amma Twumwa Owusu-Ansah, Solomon Fiifi Ofori-Acquah
INTRODUCTION: Sickle cell disease is highly prevalent in Africa with a significant public health burden. Nonetheless, morbidity and mortality in sickle cell disease that result from the progression of organ damage is not well understood. The Organ Damage in Sickle Cell Disease Study (ORDISS) is designed as a longitudinal cohort study to provide critical insight into cellular and molecular pathogenesis of chronic organ damage for the development of future innovative treatment. METHODS AND ANALYSIS: ORDISS aims to recruit children aged 0-15 years who attend the Kumasi Centre for Sickle Cell Disease based at the Komfo Anokye Teaching Hospital in Kumasi, Ghana...
August 28, 2017: BMJ Open
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