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Genetics and ethics

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https://www.readbyqxmd.com/read/28803222/biobanking-in-the-subcontinent-exploring-concerns
#1
Aamir M Jafarey, Sualeha Siddiq Shekhani, Bushra Shirazi
Biobanking is an important tool for biomedical research. However, it raises a variety of ethical issues, which are compounded in the developing world. This paper is based on data from three sources on the ethical issues associated with biobanking, including a mixed method pilot study conducted with students in Karachi, Pakistan, a workshop in Karachi, and another workshop held in Bengaluru, India. Findings from these sources reveal a unanimous lack of clarity about what constitutes a biobank. While informed consent was deemed necessary for storage of materials, participants were unsure of how this could be achieved for samples stored indefinitely for future research...
July 11, 2017: Indian Journal of Medical Ethics
https://www.readbyqxmd.com/read/28801311/ethical-issues-when-modelling-brain-disorders-in-non-human-primates
#2
Carolyn P Neuhaus
Non-human animal models of human diseases advance our knowledge of the genetic underpinnings of disease and lead to the development of novel therapies for humans. While mice are the most common model organisms, their usefulness is limited. Larger animals may provide more accurate and valuable disease models, but it has, until recently, been challenging to create large animal disease models. Genome editors, such as Clustered Randomised Interspersed Palindromic Repeat (CRISPR), meet some of these challenges and bring routine genome engineering of larger animals and non-human primates (NHPs) well within reach...
August 11, 2017: Journal of Medical Ethics
https://www.readbyqxmd.com/read/28799494/contribution-of-large-animals-to-translational-research-on-prenatal-programming-of-obesity-and-associated-diseases
#3
Gonzalez-Bulnes, Chavatte-Palmer
BACKGROUND: The awareness of factors causing obesity and associated disorders has grown up in the last years from genome to a more complicated concept (developmental programming) in which prenatal and early-postnatal conditions markedly modify the phenotype and homeostasis of the individuals and determine juvenile growth, life-time fitness/obesity and disease risks. Experimentation in human beings is impeded by ethical issues plus inherent high variability and confounding factors (genetics, lifestyle and socioeconomic heterogeneity) and preclinical studies in adequate translational animal models are therefore decisive...
August 11, 2017: Current Pharmaceutical Biotechnology
https://www.readbyqxmd.com/read/28799483/ethical-application-of-precision-medicine-to-schizophrenia-management
#4
Steven Daws
A recent effort has been made to better characterize the genetic architecture of schizophrenia, and apply a precision medicine model to its treatment. In pursuing this approach, it is likely that ethical concerns regarding cost-benefit uncertainties, the duty to inform and confidentiality will arise. Due to the complexity of schizophrenia's genetic profile, research efforts must be weighed against the risk to human subjects and the required consumption of valuable healthcare resources. Genetic risk profiles must be judged in conjunction with actionability and must be fully explained to patients and others potentially affected...
July 2017: New Bioethics: a Multidisciplinary Journal of Biotechnology and the Body
https://www.readbyqxmd.com/read/28798225/ethical-issues-in-alzheimer-s-disease-research-involving-human-subjects
#5
Dena S Davis
As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) the creation of cohorts of 'study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants' welfare if the information is obtained by insurance companies or long-term care providers; (5) the use of study partners that creates unique risks of harm to the relationship of subject and study partner...
August 10, 2017: Journal of Medical Ethics
https://www.readbyqxmd.com/read/28795404/palliative-drug-treatments-for-breathlessness-in-cystic-fibrosis
#6
REVIEW
Nishant Jaiswal, Meenu Singh, Amit Agarwal, Kiran K Thumburu
BACKGROUND: Cystic fibrosis is a life-limiting autosomal recessive genetic illness. A feeling of shortness of breath is common in cystic fibrosis, especially as the disease progresses. Reversing the underlying cause is the priority when treating breathlessness (dyspnoea), but when it is not feasible, palliation (easing) becomes the primary goal to improve an individual's quality of life. A range of drugs administered by various routes have been used, but no definite guidelines are available...
August 10, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28795204/-entitlement-to-prophylactic-treatment-in-cases-of-genetic-predisposition-for-breast-cancer-interdisciplinary-perspectives
#7
REVIEW
Friedhelm Meier, Jens Ried, Anke Harney, Kerstin Rhiem, Silke Neusser, Anja Neumann, Jürgen Wasem, Rita Schmutzler, Stefan Huster, Peter Dabrock
Genetic tests can detect the predisposition to various diseases. The demand for gene diagnostics and corresponding prophylactic measures is increasing steadily. In the German healthcare system, however, legal uncertainties exist as to whether a mere risk of disease is reason enough to bear the costs for prophylactic measures. When medically effective prophylactic measures are available in certain cancer diseases, such as in hereditary breast cancer, the current practice of deciding in individual cases appears to be insufficient...
August 9, 2017: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
https://www.readbyqxmd.com/read/28789658/healthcare-professionals-and-patients-perspectives-on-consent-to-clinical-genetic-testing-moving-towards-a-more-relational-approach
#8
Gabrielle Natalie Samuel, Sandi Dheensa, Bobbie Farsides, Angela Fenwick, Anneke Lucassen
BACKGROUND: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. METHODS: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015)...
August 8, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28777929/human-germline-genome-editing
#9
REVIEW
Kelly E Ormond, Douglas P Mortlock, Derek T Scholes, Yvonne Bombard, Lawrence C Brody, W Andrew Faucett, Nanibaa' A Garrison, Laura Hercher, Rosario Isasi, Anna Middleton, Kiran Musunuru, Daniel Shriner, Alice Virani, Caroline E Young
With CRISPR/Cas9 and other genome-editing technologies, successful somatic and germline genome editing are becoming feasible. To respond, an American Society of Human Genetics (ASHG) workgroup developed this position statement, which was approved by the ASHG Board in March 2017. The workgroup included representatives from the UK Association of Genetic Nurses and Counsellors, Canadian Association of Genetic Counsellors, International Genetic Epidemiology Society, and US National Society of Genetic Counselors...
August 3, 2017: American Journal of Human Genetics
https://www.readbyqxmd.com/read/28776324/maternal-and-foetal-outcomes-following-natural-vaginal-versus-caesarean-section-c-section-delivery-in-women-with-bleeding-disorders-and-carriers
#10
REVIEW
Laxminarayan Karanth, Sachchithanantham Kanagasabai, Adinegara Bl Abas
BACKGROUND: Bleeding disorders are uncommon but may pose significant bleeding complications during pregnancy, labour and following delivery for both the woman and the foetus. While many bleeding disorders in women tend to improve in pregnancy, thus decreasing the haemorrhagic risk to the mother at the time of delivery, some do not correct or return quite quickly to their pre-pregnancy levels in the postpartum period. Therefore, specific measures to prevent maternal bleeding and foetal complications during childbirth, are required...
August 4, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28776284/breast-cancer-in-africa-prevalence-treatment-options-herbal-medicines-and-socioeconomic-determinants
#11
REVIEW
Kiven Erique Lukong, Yetunde Ogunbolude, Jean Paul Kamdem
Breast cancer is the leading cause of cancer-related deaths in women worldwide. GLOBOCAN estimated about 1.7 million new cases of breast cancer diagnoses worldwide and about 522,000 deaths in 2012. The burden of breast cancer mortality lies in the developing low-income and middle-income countries, where about 70% of such deaths occur. The incidence of breast cancer is also rising in low-income and middle-income countries in Africa as trend towards urbanization, and adoption of Western lifestyles increases. In general, the triple-negative breast cancer (TNBC) subtype tends to be frequent in women of African ancestry...
August 4, 2017: Breast Cancer Research and Treatment
https://www.readbyqxmd.com/read/28763076/-study-plan-2016-of-the-licentiate-of-medical-surgery-of-the-faculty-of-higher-studies-iztacala
#12
Adolfo René Méndez-Cruz, Xavier de Jesús Novales-Castro, Lilia Isabel Ramírez-García, Eugenio Camarena-Ocampo, Julia Reyes-Reali, Uriel Calderón-Abundes, Dante Amato
The 2016 undergraduate medical degree curriculum at the Facultad de Estudios Superiores Iztacala of the Universidad Nacional Autónoma de México (UNAM) is presented. It is the result of a long institutional reflection and academic dialog process of approximately three years, which culminated in its approval by UNAM's Academic Council for the Biology, Chemistry, and Health Sciences areas on January 25, 2016. Its most relevant characteristics are: modular organization, four knowledge areas (biomedical, methodological, socio-psychological, and humanistic and medical practice), and new modules such as Seminar of socio-psycho-biological integration; Genetics and molecular biology; Biochemistry and cellular biology; Pharmacological basis of therapeutics; Infectious diseases, microbiology and parasitology; Medical ethics; Public health; and Evidence-based medicine - clinical epidemiology...
May 2017: Gaceta Médica de México
https://www.readbyqxmd.com/read/28750664/harvesting-multipotent-progenitor-cells-from-a-small-sample-of-tonsillar-biopsy-for-clinical-applications
#13
Raju Khatri, Michal Arad, Timothy Ortlip, Benjamin A Portney, W Alex Meltzer, Silviu Diaconu, Lorna E Silipino, Ying Wang, David M Kaetzel, Rodney J Taylor, Michal Zalzman
BACKGROUND: Human adult stem cells hold the potential for the cure of numerous conditions and degenerative diseases. They possess major advantages over pluripotent stem cells as they can be derived from donors at any age, and therefore pose no ethical concerns or risk of teratoma tumor formation in vivo. Furthermore, they have a natural ability to differentiate and secrete factors that promote tissue healing without genetic manipulation. However, at present, clinical applications of adult stem cells are limited by a shortage of a reliable, standardized, and easily accessible tissue source which does not rely on specimens discarded from unrelated surgical procedures...
July 27, 2017: Stem Cell Research & Therapy
https://www.readbyqxmd.com/read/28746767/the-moral-imagination-of-de-extinction
#14
Bruce Jennings
We live amidst the sixth great extinction of life on Earth, and we live under the sign of molecular biology and biotechnology. An ethical maxim that is well-nigh universally acknowledged holds that with great power comes great moral responsibility. For those who accept the science and embrace the responsibility, there are two rather different kinds of moral vision and moral imagination at work. Detractors of biotechnology say that we should see ourselves as creaturely good citizens of the biotic community, accepting and accommodating what evolutionary natural selection has bequeathed to us, warts and all...
July 2017: Hastings Center Report
https://www.readbyqxmd.com/read/28746764/de-extinction-and-taking-control-of-earth-s-metabolism
#15
Christopher J Preston
In a laboratory on a university campus in Santa Cruz, California, Ben Novak is doing everything he can to bring Ectopistes migratorius back from the dead. Using techniques now available in genome reading and gene synthesis, he and paleogenomicist Beth Shapiro hope that, by 2032, a flock of passenger pigeons ten thousand or more strong will have resumed an ecologically significant role in the mast forests of the Eastern United States. Novak knows-and the International Union for Conservation of Nature (IUCN) affirms-that the challenges involved in making de-extinction work are far from solely genetic...
July 2017: Hastings Center Report
https://www.readbyqxmd.com/read/28746760/de-extinction-and-conservation-genetics-in-the-anthropocene
#16
Ronald Sandler
One interesting feature of de-extinction-particularly with respect to long-extinct species such as the passenger pigeon, thylacine, and mammoth-is that it does not fit neatly into the primary rationales for adopting novel ecosystem-management and species-conservation technologies and strategies: efficiency and necessity. The efficiency rationale is that the new technology or strategy enables conservation biologists to do what they already do more effectively. Why should researchers embrace novel information technologies? Because they allow scientists to better track, monitor, map, aggregate, and analyze species behaviors, biological systems, and human-environment interactions...
July 2017: Hastings Center Report
https://www.readbyqxmd.com/read/28735446/commentary-for-special-issue-of-prevention-science-using-genetics-in-prevention-science-fiction-or-science-fact
#17
Danielle M Dick
A growing number of prevention studies have incorporated genetic information. In this commentary, I discuss likely reasons for growing interest in this line of research and reflect on the current state of the literature. I review challenges associated with the incorporation of genotypic information into prevention studies, as well as ethical considerations associated with this line of research. I discuss areas where developmental psychologists and prevention scientists can make substantive contributions to the study of genetic predispositions, as well as areas that could benefit from closer collaborations between prevention scientists and geneticists to advance this area of study...
July 22, 2017: Prevention Science: the Official Journal of the Society for Prevention Research
https://www.readbyqxmd.com/read/28735297/regulating-the-advertising-of-genetic-tests-in-europe-a-balancing-act
#18
REVIEW
Louiza Kalokairinou, Pascal Borry, Heidi Carmen Howard
Direct-to-consumer (DTC) genetic tests (GT) have provoked criticism over their potential adverse impact on public health. The European Parliament called for a ban on DTC advertising of GT during the debate for the adoption of a European Regulation on in vitro diagnostic medical devices. This proposal, however, was not ultimately retained in the final text. Instead, the regulation includes an article prohibiting misleading claims for this kind of advertising. These two different approaches raise questions about the optimal degree of regulation...
July 22, 2017: Journal of Medical Genetics
https://www.readbyqxmd.com/read/28725950/genome-editing-and-assisted-reproduction-curing-embryos-society-or-prospective-parents
#19
Giulia Cavaliere
This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis (PGD). Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the child's welfare and the argument of parental reproductive autonomy...
July 19, 2017: Medicine, Health Care, and Philosophy
https://www.readbyqxmd.com/read/28720322/rodent-large-animal-and-non-human-primate-models-of-spinal-cord-injury
#20
REVIEW
Raffaele Nardone, Cristina Florea, Yvonne Höller, Francesco Brigo, Viviana Versace, Piergiorgio Lochner, Stefan Golaszewski, Eugen Trinka
In this narrative review we aimed to assess the usefulness of the different animal models in identifying injury mechanisms and developing therapies for humans suffering from spinal cord injury (SCI). Results obtained from rodent studies are useful but, due to the anatomical, molecular and functional differences, confirmation of these findings in large animals or non-human primates may lead to basic discoveries that cannot be made in rodent models and that are more useful for developing treatment strategies in humans...
June 21, 2017: Zoology: Analysis of Complex Systems, ZACS
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