Perspectives on Achieving Institutional Trust in Personalized Medicine

Samuel, Gabrielle; Dheensa, Sandi

doi:10.1080/15265161.2018.1431724

Cited by 5 publications

(3 citation statements)

References 7 publications

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“…As Perrault and McCullock note, what is fascinating about this study is its illustration of what Annas (2017) refers to as “informed choice,” that is, that individuals want to be asked to participate, and they want the choice to find out more information, but that this does not necessarily mean that they want to become more informed. We could tentatively extrapolate that these findings nicely illustrate what has been shown repeatedly in other areas of research (Samuel & Dheensa, 2018)—that consent is not necessarily the panacea of ethics practice, but, along with other sociocultural factors, trust in the researcher (which could be argued can come from being asked in the first place, as this suggests openness and transparency) is a vital component too. Having said this, as Perrault and McCullock note, the opposite could also be true: Being content with a short consent form could be indicative of the “click society” which we inhabit, and consent then becomes an oxymoron because participants are not actually informed, and as the authors explain, if a person is unaware of what they do not know, they might not realize they want to know more.…”

supporting

confidence: 77%

Guest Editorial: Ethical Issues in Social Media Research

Samuel¹,

Buchanan²

2020

Journal of Empirical Research on Human Research Ethics

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supporting

confidence: 77%

Guest Editorial: Ethical Issues in Social Media Research

Samuel¹,

Buchanan²

2020

Journal of Empirical Research on Human Research Ethics

Self Cite

View full text Add to dashboard Cite

“…Consent is necessary, but not sufficient; it forms one component in the framework in which the test sits. The concept of trust in those frameworks is critical [ 64 ]; several discussants with clinical experience considered that 100kGP benefitted from the trust accrued by the NHS as a beneficent service provider. Participants were ascertained and recruited by NHS personnel in teams often known to them [ 54 ]; recruitment materials carried ‘those three letters in the little blue box’, and ‘assumed [their donation] is going to the greater good’.…”

Section: Consentmentioning

confidence: 99%

Genomic health data generation in the UK: a 360 view

et al. 2021

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In the UK, genomic health data is being generated in three major contexts: the healthcare system (based on clinical indication), in large scale research programmes, and for purchasers of direct-to-consumer genetic tests. The recently delivered hybrid clinical/research programme, 100,000 Genomes Project set the scene for a new Genomic Medicine Service, through which the National Health Service aims to deliver consistent and equitable care informed by genomics, while providing data to inform academic and industry research and development. In parallel, a large scale research study, Our Future Health, has UK Government and Industry investment and aims to recruit 5 million volunteers to support research intended to improve early detection, risk stratification, and early intervention for chronic diseases. To explore how current models of genomic health data generation intersect, and to understand clinical, ethical, legal, policy and social issues arising from this intersection, we conducted a series of five multidisciplinary panel discussions attended by 28 invited stakeholders. Meetings were recorded and transcribed. We present a summary of issues identified: genomic test attributes; reasons for generating genomic health data; individuals’ motivation to seek genomic data; health service impacts; role of genetic counseling; equity; data uses and security; consent; governance and regulation. We conclude with some suggestions for policy consideration.

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“…Public acceptance of omics based biomarkers has variously been cited as a critical aspect in realizing the potential of precision medicine to improve health outcomes [56]. Additionally, issues of problematized participant consents have been resolved through genomic engagement that helps build institutional trust among the public [57].…”

Section: H3 User Response (Usr) Due To Public Genomic Awareness Medimentioning

confidence: 99%

The mediating effects of public genomic knowledge in precision medicine implementation: A structural equation model approach

Mogaka

Chimbari

2020

PLoS ONE

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Precision medicine emphasizes predictive, preventive and personalized treatment on the basis of information gleaned from personal genetic and environmental data. Its implementation at health systems level is regarded as multifactorial, involving variables associated with omics technologies, public genomic awareness and adoption tendencies for new medical technologies. However, interrelationships of the various factors and their synergy has not been sufficiently quantified. Based on a survey of 270 participants involved in the use of molecular tests (omics-based biomarkers, OBMs), this study examined how characteristics of omics biomarkers influence precision medicine implementation outcomes (ImO) through an intermediary factor, public genomic awareness (represented by User Response, UsR). A structural equation modelling (SEM) approach was applied to develop and test a 3 latent variable mediation model; each latent variable being measured by a set of indicators ranging between three and six. Mediation analysis results confirmed a partial mediation effect (an indirect effect represented as the product of paths 'a' and 'b' (a*b)) of 0.36 at 90% confidence level, CI = [0.03, 9.94]. Results from the individual mediation paths 'a' and 'b' however, showed that these effects were negative(a =-0.38, b =-0.94). Path 'a' represents the effect of characteristics of OBMs on the mediator, UsR; 'b' represents the effect of the mediator, UsR on implementation outcomes, ImO, holding OBMs constant. The results have both theoretical and practice implications for biomedical genomics research and clinical genomics, respectively. For instance, the results imply better ways have to be devised to more effectively engage the public in addressing extended family support for extended family cascade screening, especially for monogenic hereditary conditions like BRCA-related breast cancer and colorectal cancer in Lynch syndrome families. At basic biomedical research level, results suggest an integrated biomarker development pipeline, with early consideration of factors that may influence biomarker uptake. The results are also relevant at health systems level in indicating which factors should be addressed for successful.

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Perspectives on Achieving Institutional Trust in Personalized Medicine

Cited by 5 publications

References 7 publications

Guest Editorial: Ethical Issues in Social Media Research

Guest Editorial: Ethical Issues in Social Media Research

Genomic health data generation in the UK: a 360 view

The mediating effects of public genomic knowledge in precision medicine implementation: A structural equation model approach

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