Ethics of genomic research

Mathaiyan, Jayanthi; Chandrasekaran, Adithan; Davis, Sanish

doi:10.4103/2229-3485.106405

Cited by 23 publications

(4 citation statements)

References 10 publications

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“…The matter is what is “right to know and what is right to not know.” Not all patients want to know or can understand the meaning of genetic results, mainly when they predict the risk of the development of cancer or other chronic disease. This could cause anxiety or depression in patients and their families and, in some cases, this could results in unnecessary harm, since not all genetic susceptibility can be expected to develop into the disease in the future [ 9 , 149 ]. On the other hand, if the individual or his/her siblings develop the disease that could be “treated in time” in light of genomic results, this could be considered as an ethical injustice.…”

Section: Discussionmentioning

confidence: 99%

Precision and Personalized Medicine: How Genomic Approach Improves the Management of Cardiovascular and Neurodegenerative Disease

Strianese

Rizzo

Ciccarelli

et al. 2020

Genes

109

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Life expectancy has gradually grown over the last century. This has deeply affected healthcare costs, since the growth of an aging population is correlated to the increasing burden of chronic diseases. This represents the interesting challenge of how to manage patients with chronic diseases in order to improve health care budgets. Effective primary prevention could represent a promising route. To this end, precision, together with personalized medicine, are useful instruments in order to investigate pathological processes before the appearance of clinical symptoms and to guide physicians to choose a targeted therapy to manage the patient. Cardiovascular and neurodegenerative diseases represent suitable models for taking full advantage of precision medicine technologies applied to all stages of disease development. The availability of high technology incorporating artificial intelligence and advancement progress made in the field of biomedical research have been substantial to understand how genes, epigenetic modifications, aging, nutrition, drugs, microbiome and other environmental factors can impact health and chronic disorders. The aim of the present review is to address how precision and personalized medicine can bring greater clarity to the clinical and biological complexity of these types of disorders associated with high mortality, involving tremendous health care costs, by describing in detail the methods that can be applied. This might offer precious tools for preventive strategies and possible clues on the evolution of the disease and could help in predicting morbidity, mortality and detecting chronic disease indicators much earlier in the disease course. This, of course, will have a major effect on both improving the quality of care and quality of life of the patients and reducing time efforts and healthcare costs.

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Section: Discussionmentioning

confidence: 99%

Precision and Personalized Medicine: How Genomic Approach Improves the Management of Cardiovascular and Neurodegenerative Disease

Strianese

Rizzo

Ciccarelli

et al. 2020

Genes

109

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“…Research related to human genetics poses ethical, legal, and social issues (ELSI) that need to be appropriately addressed. Most importantly, these genetic research studies use advanced technologies which should be equally available to both economically well-placed and financially deprived people [32].…”

Section: Clinical Trials: Epidemiological and Human Genetics Studymentioning

confidence: 99%

Clinical Trials and Clinical Research: A Comprehensive Review

Kandi¹,

Vadakedath²

2023

Cureus

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Clinical research is an alternative terminology used to describe medical research. Clinical research involves people, and it is generally carried out to evaluate the efficacy of a therapeutic drug, a medical/surgical procedure, or a device as a part of treatment and patient management. Moreover, any research that evaluates the aspects of a disease like the symptoms, risk factors, and pathophysiology, among others may be termed clinical research. However, clinical trials are those studies that assess the potential of a therapeutic drug/device in the management, control, and prevention of disease. In view of the increasing incidences of both communicable and non-communicable diseases, and especially after the effects that Coronavirus Disease-19 (COVID-19) had on public health worldwide, the emphasis on clinical research assumes extremely essential. The knowledge of clinical research will facilitate the discovery of drugs, devices, and vaccines, thereby improving preparedness during public health emergencies. Therefore, in this review, we comprehensively describe the critical elements of clinical research that include clinical trial phases, types, and designs of clinical trials, operations of trial, audit, and management, and ethical concerns.

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“…Biobanking and genetic research hold the promise of improvements in human health and clinical outcomes through translational research in pharmacogenomics and personalised medicine. This potential has been recognised in India 2, 3 , but biobanking and genetic research are also associated with distinct ethical concerns, including issues related to secondary use of stored samples, informed consent, trust, benefit sharing, incidental findings, privacy and confidentiality [4][5][6] . Eliciting public perceptions within India, on biomedical research using stored HBM samples and genome editing has found that there is a lack of confidence in regulatory processes among people, who believe mechanisms such as broad consent are instituted to primarily protect researchers interests 7,8 .…”

Section: Introductionmentioning

confidence: 99%

Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India

Warrier

Bull

et al. 2021

Wellcome Open Res

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Background: There is growing interest in advancing biobanking and genetic research in many countries, including India. Concurrently, more importance is being placed on participatory approaches involving the public and other stakeholders in addressing ethical issues and policymaking as part of a broader governance approach. We analyse the tools, purposes, outcomes and limitations of engaging people towards biobanking and genetic research governance that have been undertaken worldwide, and explore their relevance to India. Methods: Papers to be reviewed were identified through a targeted literature search carried out using ProQuest and PubMed. Retrieved papers were analysed with the R package for Qualitative Data Analysis using inductive coding and thematic analysis, guided by the Framework Method. Results: Empirical studies on public and community engagement in the context of biobanking and or genetic research show a predominance towards the end of the last decade, spanning 2007 to 2019. Numerous strategies—including public meetings, community durbars, focus group discussions, interviews, deliberations, citizen-expert panels and community advisory boards—have been used to facilitate communication, consultation and collaboration with people, at the level of general and specific publics. Engagement allowed researchers to understand how people’s values, opinions and experiences related to the research process; and enabled participants to become partners within the conduct of research. Conclusions: Constructs such as ‘co-production’, ‘engagement of knowledges’, ‘rules of engagement’ and ‘stewardship’ emerge as significant mechanisms that can address the ethical challenges and the governance of biobanking and genetic research in India. Given the inherent diversity of the Indian population and its varying cultural values and beliefs, there is a need to invest time and research funds for engagement as a continuum of participatory activity, involving communication, consultation and collaboration in relation to biobanking and genetic research. Further research into these findings is required to explore their effective employment within India

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Ethics of genomic research

Cited by 23 publications

References 10 publications

Precision and Personalized Medicine: How Genomic Approach Improves the Management of Cardiovascular and Neurodegenerative Disease

Precision and Personalized Medicine: How Genomic Approach Improves the Management of Cardiovascular and Neurodegenerative Disease

Clinical Trials and Clinical Research: A Comprehensive Review

Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India

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