Unraveling non-participation in genomic research: A complex interplay of barriers, facilitators, and sociocultural factors.
Sign Up to like & getrecommendations! Published in 2023 at "Journal of genetic counseling"
DOI: 10.1002/jgc4.1707
Abstract: Although genomic research offering next-generation sequencing (NGS) has increased the diagnoses of rare/ultra-rare disorders, populations experiencing health disparities infrequently participate in these studies. The factors underlying non-participation would most reliably be ascertained from individuals who… read more here.
Keywords: barriers facilitators; facilitators sociocultural; non participation; participation ... See more keywords
Using the Data We Have: Improving Diversity in Genomic Research.
Sign Up to like & getrecommendations! Published in 2019 at "American journal of human genetics"
DOI: 10.1016/j.ajhg.2019.07.008
Abstract: The shortage of genomic research data in persons of non-European ancestry is impeding our ability to use genomics in the clinical care of non-European individuals. Improved efforts to utilize data on non-European populations will increase… read more here.
Keywords: research; using data; data improving; genomic research ... See more keywords
‘CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research
Sign Up to like & getrecommendations! Published in 2021 at "European Journal of Human Genetics"
DOI: 10.1038/s41431-020-00782-w
Abstract: The complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the… read more here.
Keywords: medicine; research; ctrl; genomic research ... See more keywords
UK Biobank debuts as a powerful resource for genomic research
Sign Up to like & getrecommendations! Published in 2018 at "Nature Medicine"
DOI: 10.1038/s41591-018-0276-3
Abstract: Analysis of the UK Biobank genetic and phenotypic data demonstrate the power of including a large population and detailed phenotyping in a prospective study to identify genetic and lifestyle factors related to health and disease. read more here.
Keywords: resource genomic; biobank debuts; debuts powerful; biobank ... See more keywords
Big Data in Genomic Research for Big Questions with Examples from Covid-19 and Other Zoonoses.
Sign Up to like & getrecommendations! Published in 2022 at "Journal of applied microbiology"
DOI: 10.1093/jambio/lxac055
Abstract: Omics research inevitably involves the collection and analysis of big data, which can only be handled by automated approaches. Here we point out that analysis of big data in the field of genomics dictates certain… read more here.
Keywords: big questions; big data; research big; data genomic ... See more keywords
Data ownership in genomic research consortia
Sign Up to like & getrecommendations! Published in 2024 at "Journal of Law and the Biosciences"
DOI: 10.1093/jlb/lsae024
Abstract: ABSTRACT Discourse around ownership of genomic sequence data has proliferated over recent years. There are likely to be few people who don’t feel a degree of connectedness to their genomic data. The inclusion of individuals’… read more here.
Keywords: ownership genomic; genomic research; research; research consortia ... See more keywords
Genomic research delivering on promises: From rejuvenation to vaccines and pharmacogenetics
Sign Up to like & getrecommendations! Published in 2020 at "Journal of Clinical Pharmacy and Therapeutics"
DOI: 10.1111/jcpt.13131
Abstract: There has been astounding progress made in the treatment of disease over recent years. This progress is particularly marked in cell therapy and in the personalization of therapy based on genetic insight, an approach known… read more here.
Keywords: medicine; promises rejuvenation; research delivering; genomic research ... See more keywords
Equitable inclusion of racialised communities in genomic research: a scoping review
Sign Up to like & getrecommendations! Published in 2025 at "BMJ Open"
DOI: 10.1136/bmjopen-2024-095585
Abstract: Objectives Genome Canada has committed significant resources to ensure that racialised groups are included in its initiatives; however, specific equity considerations related to engaging these communities in human genomic research continue to require deeper attention… read more here.
Keywords: racialised communities; human genomic; genomic research; research ... See more keywords
Informed consent, genomic research and mental health: A integrative review
Sign Up to like & getrecommendations! Published in 2022 at "Nursing Ethics"
DOI: 10.1177/09697330211066573
Abstract: Background Research on genomics has increased while the biobank activities are becoming more common in different countries. In the mental health field, the questions concerning the potential participants’ vulnerability as well as capacity to give… read more here.
Keywords: informed consent; research; genomic research; mental health ... See more keywords
How participation in deliberative engagement affects awareness of, and attitudes towards, genomics research and data sharing: evidence from rural Ghana
Sign Up to like & getrecommendations! Published in 2025 at "BMC Medical Ethics"
DOI: 10.1186/s12910-025-01251-z
Abstract: Deliberative engagement offers an opportunity for communities to provide informed opinions on complex ethical, legal, and social issues in genomic research and biobanking. However, its use is limited, particularly in resource-constrained settings like Ghana. This… read more here.
Keywords: deliberative engagement; data sharing; ghana; genomic research ... See more keywords
Underrepresented populations in genomic research: a qualitative study of researchers’ perspectives
Sign Up to like & getrecommendations! Published in 2025 at "BMC Medical Genomics"
DOI: 10.1186/s12920-025-02140-5
Abstract: The lack of diversity in genomic data limits researchers’ ability to investigate the relationships between genetic profiles, disease manifestations, and responses to new therapies. As a result, innovations in treatment could have potentially harmful effects… read more here.
Keywords: populations genomic; population; genomic research; research ... See more keywords