Results for 'genomic testing'

973 found
Order:
  1.  35
    Genomic Test Results and the Courtroom: The Roles of Experts and Expert Testimony.Edward Ramos, Shawneequa L. Callier, Peter B. Swann & Hosea H. Harvey - 2016 - Journal of Law, Medicine and Ethics 44 (1):205-215.
    The rapid advancement from single-gene testing to whole genome sequencing has significantly broadened the type and amount of information available to researchers, physicians, patients, and the public in general. Much debate has ensued about whether genomic test results should be reported to research participants, patients and consumers, and at what stage we can be sure that existing evidence justifies their use in clinical settings. Courts and judges evaluating the utility of these results will not be immune to this (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  2.  21
    Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI).Eugenio Frixione, Fernando Navarro-Garcia, Garbiñe Saruwatari-Zavala & Tania Ascencio-Carbajal - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundGenetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient’s life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  3. Military Genomic Testing: Proportionality, Expected Benefits, and the Connection between Genotypes and Phenotypes.Charles H. Pence - 2015 - Journal of Law and the Biosciences 2 (1):85-91.
    Mehlman and Li offer a framework for approaching the bioethical issues raised by the military use of genomics that is compellingly grounded in both the contemporary civilian and military ethics of medical research, arguing that military commanders must be bound by the two principles of paternal- ism and proportionality. I agree fully. But I argue here that this is a much higher bar than we may fully realize. Just as the principle of proportionality relies upon a thorough assessment of harms (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  4.  21
    Personal Genomic Testing, Genetic Inheritance, and Uncertainty.Paul H. Mason - 2017 - Journal of Bioethical Inquiry 14 (4):583-584.
    The case outlined below is the basis for the In That Case section of the “Ethics and Epistemology of Big Data” symposium. Jordan receives reports from two separate personal genomic tests that provide intriguing data about ancestry and worrying but ambiguous data about the potential risk of developing Alzheimer’s disease. What began as a personal curiosity about genetic inheritance turns into an alarming situation of medical uncertainty. Questions about Jordan’s family tree are overshadowed by even more questions about Alzheimer’s (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  5.  76
    Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues.Eline M. Bunnik, Maartje H. N. Schermer & A. Cecile J. W. Janssens - 2011 - BMC Medical Ethics 12 (1):11.
    Background: As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of (...)
    Direct download (9 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  6.  22
    Genomic Testing, Unexpected Consanguinity, and Adolescent Parents.Michelle McGowan, Teneille Brown, Aimee B. Biller & Jennifer deSante-Bertkau - 2021 - Hastings Center Report 51 (5):8-11.
    Hastings Center Report, Volume 51, Issue 5, Page 8-11, September‐October 2021.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  7.  34
    Do genomic tests enhance autonomy?Eline M. Bunnik - 2015 - Journal of Medical Ethics 41 (4):315-316.
  8.  39
    Personal Genome Testing: Do You Know What You Are Buying?Heidi Howard & Pascal Borry - 2009 - American Journal of Bioethics 9 (6-7):11-13.
  9.  32
    Predictive Genomic Testing of Children for Adult Onset Disorders: A Canadian Perspective.Michael J. Szego, M. Stephen Meyn, James A. Anderson, Robin Hayeems, Cheryl Shuman, Nasim Monfared, Sarah Bowdin & Randi Zlotnik Shaul - 2014 - American Journal of Bioethics 14 (3):19-21.
  10.  24
    Genomic Testing and Genomic Care: Are They Talking to Each Other?Julian Barwell & Anirudh Kumar - 2015 - Journal of Clinical Research and Bioethics 6 (6).
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  11.  23
    Adoptees’ Pursuit of Genomic Testing to Fill Gaps in Family Health History and Reduce Healthcare Disparity.Kari A. Casas - 2018 - Narrative Inquiry in Bioethics 8 (2):131-135.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  12.  48
    From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.Jacqueline Savard, Chriselle Hickerton, Sylvia A. Metcalfe, Clara Gaff, Anna Middleton & Ainsley J. Newson - 2020 - AJOB Empirical Bioethics 11 (1):63-76.
    Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  13.  55
    Knowledge and attitudes to personal genomics testing for complex diseases among Nigerians.Lawrence Fagbemiro & Clement Adebamowo - 2014 - BMC Medical Ethics 15 (1):34.
    The study examined the knowledge and attitudes to personal genomics testing for complex diseases among Nigerians and identified how the knowledge and attitudes vary with gender, age, religion, education and related factors.
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  14.  34
    Challenges in the Use of Direct-to-Consumer Personal Genome Testing in Children.Holly K. Tabor & Maureen Kelley - 2009 - American Journal of Bioethics 9 (6-7):32-34.
    In the target article, McGuire and colleagues (2009) found that 54% of social networkers would consider using direct-to-consumer personal genome testing (DTC PGT) for their child and that 63% agree...
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  15.  61
    Personal utility in genomic testing: is there such a thing?Eline M. Bunnik, A. Cecile J. W. Janssens & Maartje H. N. Schermer - 2015 - Journal of Medical Ethics 41 (4):322-326.
  16.  72
    Social Networkers' Attitudes Toward Direct-to-Consumer Personal Genome Testing.Amy McGuire, Christina Diaz, Tao Wang & Susan Hilsenbeck - 2009 - American Journal of Bioethics 9 (6-7):3-10.
    Purpose: This study explores social networkers' interest in and attitudes toward personal genome testing (PGT), focusing on expectations related to the clinical integration of PGT results. Methods: An online survey of 1,087 social networking users was conducted to assess 1) use and interest in PGT; 2) attitudes toward PGT companies and test results; and 3) expectations for the clinical integration of PGT. Descriptive statistics were calculated to summarize respondents' characteristics and responses. Results: Six percent of respondents have used PGT, (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   26 citations  
  17.  32
    A Tidal Wave of Inevitable Data? Assetization in the Consumer Genomics Testing Industry.Nicole Gross & Susi Geiger - 2021 - Business and Society 60 (3):614-649.
    We bring together recent discussions on data capitalism and biocapitalization by studying value flows in consumer genomics firms—an industry at the intersection between health care and technology realms. Consumer genomics companies market genomic testing services to consumers as a source of fun, altruism, belonging and knowledge. But by maintaining a multisided or platform business model, these firms also engage in digital capitalism, creating financial profit from data brokerage. This is a precarious balance to strike: If these companies’ business (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  18.  24
    My Diagnostic Odyssey—A Call to Expand Access to Genomic Testing for the Next Generation.Jeremy Michelson - 2018 - Hastings Center Report 48 (S2):32-34.
    I attended the NSIGHT Ethics and Policy Advisory Board's meeting on sequencing newborns as a research associate in a joint apprenticeship between the University of California, San Francisco, Institute for Human Genetics and the university's Program in Bioethics. But I also came to the meeting with a deeply personal perspective: I had spent nearly my entire childhood in search of a diagnosis and therefore was eager to hear the board's discussion on how to ethically include genomic sequencing early in (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  19. Direct to Consumer Personal Genomic Testing and Trust : A Comparative Focus Group Study of Lay Perspectives in Germany, Israel, the Netherlands and the UK.Aviad Raz Manuel Schaper, Karim Raza Marie Falahee, Elisa Garcia Gonzalez Danielle Timmermans & Sabine Wöhlke Silke Schicktanz - 2021 - In Ulrik Kihlbom, Mats G. Hansson & Silke Schicktanz, Ethical, social and psychological impacts of genomic risk communication. New York, NY: Routledge.
     
    Export citation  
     
    Bookmark  
  20.  17
    How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?Ellen Wright Clayton - 2015 - Journal of Law, Medicine and Ethics 43 (3):538-544.
    Adolescents may often have opinions about whether they want genetic and genomic testing in both the clinic and research and about who should have access to the results. This legal analysis demonstrates that the law provides very little protection to minors' wishes.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  21.  21
    (1 other version)Informed Consent in Direct-to-Consumer Personal Genome Testing: The Outline of A Model between Specific and Generic Consent.Eline M. Bunnik, A. Cecile J. W. Janssens & Maartje H. N. Schermer - 2012 - Bioethics 28 (7):343-351.
    Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we (...)
    Direct download  
     
    Export citation  
     
    Bookmark   5 citations  
  22.  3
    The Concept of Personal Utility in Genomic Testing: Three Ethical Tensions.Gabriel John Watts & Ainsley J. Newson - forthcoming - American Journal of Bioethics:1-12.
    Health Technology Assessment (HTA) has traditionally focused on efficacy, safety, and cost-effectiveness. There has long been concern, however, that this is determined by the goals of healthcare providers/payers, not patients. As a result, HTA arguably fails to reflect the overall value of health technologies—including their “non-clinical” or “personal” utility to patients and their families. The use of genomic testing in clinical care is one domain where this problem is evident, as the personal utility of results is often especially (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  23.  73
    Direct-to-Consumer Personal Genome Testing: The Problem Is Not Ignorance–It Is Market Failure.Christopher F. C. Jordens, Ian H. Kerridge & Gabrielle N. Samuel - 2009 - American Journal of Bioethics 9 (6-7):13-15.
  24.  23
    The Future Emerges from the Past: Comment on “Personal Genomic Testing, Genetic Inheritance, and Uncertainty”.Shaun Halovic - 2017 - Journal of Bioethical Inquiry 14 (4):591-592.
    The case of Jordan highlights the gamble of connecting with the past through genomic testing. Unfortunately for Jordan, his genomic testing identified two variant genes which account for up to 75 per cent of early-onset Alzheimer’s disease cases. Furthermore, his children were identified as having a 50 per cent risk of inheriting the gene which corresponds to the majority of early-onset Alzheimer’s disease cases. Now Jordan is not only burdened with the foreknowledge that he will most (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  25.  47
    Personal utility is inherent to direct-to-consumer genomic testing.Matthew Wai Heng Chung & Joseph Chi Fung Ng - 2016 - Journal of Medical Ethics 42 (10):649-652.
  26.  47
    Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.Marlies Saelaert, Heidi Mertes, Tania Moerenhout, Elfride De Baere & Ignaas Devisch - 2020 - BMC Medical Ethics 21 (1):1-12.
    Incidental findings and secondary findings, being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  27.  22
    The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease: Comment on “Personal Genomic Testing, Genetic Inheritance, and Uncertainty”.Paul Lacaze, Jane Tiller & Joanne Ryan - 2017 - Journal of Bioethical Inquiry 14 (4):585-587.
    The overarching issue with this case study is poor regulation and quality control over direct-to-consumer genetic testing, delivered in the absence of any medical oversight.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  28.  65
    How Attitudes Research Contributes to Overoptimistic Expectations of Personal Genome Testing.Eline Bunnik, A. Cecile Janssens & Maartje Schermer - 2009 - American Journal of Bioethics 9 (6-7):23-25.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  29.  16
    Reflecting Before Testing: Comment on “Personal Genomic Testing, Genetic Inheritance, and Uncertainty”.Jacqueline Savard - 2017 - Journal of Bioethical Inquiry 14 (4):589-590.
    This response is a comment on the case of Jordan presented by Mason. A key perspective we can take from this case is a consideration of: consumer motivations for testing, whether they have enough information and time to make a decision, and if the test they seek is entirely appropriate for them at their current stage of life.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  30.  29
    Controlling futures? Online Genetic Testing and Neurodegenerative Disease: Comment on “Personal Genomic Testing, Genetic Inheritance, and Uncertainty”.Narelle Warren & John Gardner - 2017 - Journal of Bioethical Inquiry 14 (4):593-594.
    Online personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one’s genetic provenance. They are especially attractive to healthy people who wish to learn about their future risk of disease, as Paul Mason’s case study of “Jordan” illustrates. In this response, we consider how online genetic testing services are used by people diagnosed with a common neurodegenerative disease, Parkinson’s disease, to gain a sense of certainty regarding the future.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  31.  49
    Genethics 2.0: Phenotypes, Genotypes, and the Challenge of Databases Generated by Personal Genome Testing.Karin Esposito & Kenneth Goodman - 2009 - American Journal of Bioethics 9 (6-7):19-21.
  32.  31
    Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.Miranda E. Vidgen, Sid Kaladharan, Eva Malacova, Cameron Hurst & Nicola Waddell - 2020 - BMC Medical Ethics 21 (1):1-11.
    Background There has been considerable investment and strategic planning to introduce genomic testing into Australia’s public health system. As more patients’ genomic data is being held by the public health system, there will be increased requests from researchers to access this data. It is important that public policy reflects public expectations for how genomic data that is generated from clinical tests is used. To inform public policy and discussions around genomic data sharing, we sought public (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  33. Genomic susceptibility as an emergent form of life? Genetic testing, identity, and the remit of medicine.Nikolas Rose - 2007 - In Regula Valérie Burri & Joseph Dumit, Biomedicine as Culture: Instrumental Practices, Technoscientific Knowledge, and New Modes of Life. Routledge.
     
    Export citation  
     
    Bookmark  
  34.  53
    Personalized Genomic Educational Testing: What Do the Undergrads Think?Nicanor Pier Giorgio Austriaco - 2012 - American Journal of Bioethics 12 (4):43-45.
  35.  56
    Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization--the case of genetic testing for autism.B. R. Jordan & D. F. C. Tsai - 2010 - Journal of Medical Ethics 36 (7):440-444.
    This paper examines some ethical issues arising from whole-genome association studies for multigenic diseases, focusing on the case of autism. Events occurring following the announcement of a genetic test for autism in France (2005–2009) are described to exemplify the ethical controversies that can arise when genetic testing for autism is applied prematurely and inappropriately promoted by biotech companies. The authors argue that genetic tests assessing one or a few genes involved in highly multigenic disorders can only be useful if: (...)
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  36.  25
    A Postapartheid Genome: Genetic Ancestry Testing and Belonging in South Africa.Laura A. Foster - 2016 - Science, Technology, and Human Values 41 (6):1015-1036.
    This article examines a genetic ancestry testing program called the Living History Project that was jointly organized by a nonprofit educational institute and a for-profit genealogy company in South Africa. It charts the precise mechanisms by which the LHP sought to shape a postapartheid genome through antiracist commitments aimed at contesting histories of colonial and apartheid rule in varied ways. In particular, it focuses on several tensions that emerged within three modes of material-discursive practice within the production of the (...)
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark  
  37.  40
    Genomics, Big Data and Privacy: Reflections upon the implications of direct-to-consumer genetic testing.Mariana Vitti Rodrigues - 2020 - Revista Natureza Humana 22 (1):21.
    This paper investigates epistemological and ethical implications of the growingavailability of direct-to-consumer genetic testing for the science and society. Direct-toconsumer genetic testing is characterized as the genetic testing sold directly to consumerswithout any assistance from professionals. By offering empowerment and control, companiesconvince consumers to sequence their genome by granting the company access to theirgenetic data in exchange to results that are not always accurate. To which extent doconsumers properly understand the results of their genetic testing? Are (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  38. Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.Susan M. Wolf, Pilar N. Ossorio, Susan A. Berry, Henry T. Greely, Amy L. McGuire, Michelle A. Penny & Sharon F. Terry - 2020 - Journal of Law, Medicine and Ethics 48 (1):69-86.
    Human genomics is a translational field spanning research, clinical care, public health, and direct-to-consumer testing. However, law differs across these domains on issues including liability, consent, promoting quality of analysis and interpretation, and safeguarding privacy. Genomic activities crossing domains can thus encounter confusion and conflicts among these approaches. This paper suggests how to resolve these conflicts while protecting the rights and interests of individuals sequenced. Translational genomics requires this more translational approach to law.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  39.  39
    Genomic Uncertainty as a Burden for Reproductive Choice? The Problem of Probabilistic Causation in Non-Invasive Prenatal Testing.Jon Rueda & Mar Vallés-Poch - 2023 - American Journal of Bioethics 23 (3):26-28.
    Hilary Bowman-Smart et al. (2023) have rightly pointed out that one of the recurring criticisms of the use of noninvasive prenatal testing (NIPT) for non-medical trait prediction is the probabilist...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  40.  73
    “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa.Francis Masiye, Bongani Mayosi & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):12.
    Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  41.  30
    Reproductive Genetic Testing and Human Genetic Variation in the Era of Genomic Medicine.Chelsea Lowther, Gregory Costain & Anne S. Bassett - 2015 - American Journal of Bioethics 15 (6):25-26.
  42. Population-Based Genome-Wide Testing in Babies : Newborn Screening or Mission Creep?Jan M. Friedman - 2025 - In Bartha Maria Knoppers, E. S. Dove, Vasiliki Rahimzadeh & Michael J. S. Beauvais, Promoting the "human" in law, policy, and medicine: essays in honour of Bartha Maria Knoppers. Boston: Brill/Nijhoff.
     
    Export citation  
     
    Bookmark  
  43.  17
    Non-invasive Prenatal Testing for Fetal Whole Genome Sequencing: An Interpretive Critical Review of the Ethical, Legal, Social, and Policy Implications.Hazar Haidar & Renata Iskander - 2022 - Canadian Journal of Bioethics / Revue canadienne de bioéthique 5 (1):1-15.
    Introduction: Non-invasive prenatal testing (NIPT) allows for genetic testing of a fetus through the analysis of cell-free DNA from the mother’s plasma. NIPT is easy and safe for the fetus, since it only requires a blood draw from the mother and therefore holds no risk of miscarriage. It is considered superior to other prenatal screening tests and can also be performed earlier in the pregnancy. NIPT has the future potential for fetal whole genome sequencing (FWGS) for an expanded (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  44.  41
    Moving from ‘fully’ to ‘appropriately’ informed consent in genomics: The PROMICE framework.Julian J. Koplin, Christopher Gyngell, Julian Savulescu & Danya F. Vears - 2022 - Bioethics 36 (6):655-665.
    Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic technologies, making traditional standards for fully informed consent difficult or impossible to meet. This is due to factors including the complexity of the test and the broad range of results it may identify. Meaningful informed consent is even more challenging to secure in contexts involving significant time constraints and emotional distress, such as when rapid genomic testing (RGS) is performed in neonatal intensive care units. In (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  45.  45
    What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling.Lorraine Cowley - 2016 - Bioethics 30 (8):628-635.
    This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  46.  18
    Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda: a qualitative study.Joseph Ochieng, Betty Kwagala, John Barugahare, Marlo Möller & Keymanthri Moodley - 2024 - Journal of Medical Ethics 50 (12):829-834.
    BackgroundGenetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.The (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  47.  52
    Genomic Research and Incidental Findings.Brian Van Ness - 2008 - Journal of Law, Medicine and Ethics 36 (2):292-297.
    Medical practice is poised to incorporate genomescale testing into treatment decisions. However, broad genome testing in laboratories may lead to discoveries not anticipated, yet highly significant to the health of the patient. Understanding the complexity of our genome and its relationship to our health is an overwhelming task. Currently, much of the effort to unravel this complexity is in the realm of research. However, researchers are often neither qualified nor prepared to deal with incidental findings of genetic abnormalities (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  48.  28
    The Streetlight Effect: Regulating Genomics Where the Light Is.Barbara J. Evans - 2020 - Journal of Law, Medicine and Ethics 48 (1):105-118.
    Regulatory policy for genomic testing may be subject to biases that favor reliance on existing regulatory frameworks even when those frameworks carry unintended legal consequences or may be poorly tailored to the challenges genomic testing presents. This article explores three examples drawn from genetic privacy regulation, oversight of clinical uses of genomic information, and regulation of genomic software. Overreliance on expedient regulatory approaches has a potential to undercut complete and durable solutions.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  49.  70
    The human genome project, predictive testing and insurance contracts: Ethical and legal responses. [REVIEW]Ruth Chadwick & Charles Ngwena - 1995 - Res Publica 1 (2):115-129.
    The economic costs to the insurers of complementary routine genetic testing would outweigh the benefits. However, should testing technology in future be refined so as to produce a cheap and reliable test, there is no reason why insurers might not take up predictive testing as part of the normal underwriting process. It is this possibility which justifies formulating a pre-emptive policy. At the very least, there are reasons for promoting and protecting the welfare of the proposer so (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  50.  55
    Whole genome sequencing in children: ethics, choice and deliberation.Ainsley J. Newson - 2017 - Journal of Medical Ethics 43 (8):540-542.
    Implementing whole genome sequencing (WGS) in paediatric settings demands sensitive and nuanced examination. Critical reflection as to how and when to use this technology is particularly important. This commentary on Anderson et al's (2017) evaluation of the Genome Clinic study, which involved paediatric clinical WGS, provides an opportunity for such reflection. I scrutinise three issues raised in the study: (1) the non-separation of the choice over agreeing to diagnostic WGS and whether to receive adult-onset SVs; (2) the value of deliberation (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   4 citations  
1 — 50 / 973