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
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
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
Involving people affected by a rare condition in shaping future genomic research
Sign Up to like & getrecommendations! Published in 2021 at "Research Involvement and Engagement"
DOI: 10.1186/s40900-021-00256-3
Abstract: Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are… read more here.
Keywords: research; genomic research; study; involving people ... See more keywords
Occupational and environmental exposures in the Genomic Research in Alpha-1 Antitrypsin Deficiency and Sarcoidosis (GRADS) study.
Sign Up to like & getrecommendations! Published in 2022 at "Respiratory medicine"
DOI: 10.2139/ssrn.4067143
Abstract: INTRODUCTION Sarcoidosis is a granulomatous disorder thought to be caused by exposures in genetically susceptible individuals. This study investigated whether specific exposures were associated with different sarcoidosis phenotypes. METHODS Extensive demographic, occupational and environmental exposure… read more here.
Keywords: sarcoidosis; occupational environmental; disease; research alpha ... See more keywords
Bridging the European Data Sharing Divide in Genomic Science
Sign Up to like & getrecommendations! Published in 2022 at "Journal of Medical Internet Research"
DOI: 10.2196/37236
Abstract: In this viewpoint, we argue for the importance of creating data spaces for genomic research that are detached from contexts in which fundamental rights concerns related to surveillance measures override a purpose-specific balancing of fundamental… read more here.
Keywords: data sharing; health; health data; regulation ... See more keywords
Views on genomic research result delivery methods and informed consent: a review.
Sign Up to like & getrecommendations! Published in 2021 at "Personalized medicine"
DOI: 10.2217/pme-2020-0139
Abstract: There has been little discussion of the way genomic research results should be returned and how to obtain informed consent for this. We systematically searched the empirical literature, identifying 63 articles exploring stakeholder perspectives on… read more here.
Keywords: research; delivery; genomic research; informed consent ... See more keywords