Your DNA, Your Say

Middleton, Anna

doi:10.1080/20502877.2017.1314890

Cited by 14 publications

(20 citation statements)

References 12 publications

(14 reference statements)

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“…Details of the study design, methodology, recruitment and data collection are published separately, as is a review of the context and background of this project [19][20][21].…”

Section: Methodsmentioning

confidence: 99%

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

et al. 2019

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Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.

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“…Details of the study design, methodology, recruitment and data collection are published separately, as is a review of the context and background of this project [19][20][21].…”

Section: Methodsmentioning

confidence: 99%

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

et al. 2019

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“…Despite the professional bodies who represent genetic health professionals (e.g. European Society Human Genetics and American College of Medical Genetics and Genomics) recommending that genetic counselling should be provided by DTC genetic testing companies, a review of such services indicated that the support services on offer are often severely lacking 39 .…”

Section: Introductionmentioning

confidence: 99%

Genetics in the 21st Century: Implications for patients, consumers and citizens

Roberts

Middleton

2018

F1000Res

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The first human genome project, completed in 2003, uncovered the genetic building blocks of humankind. Painstakingly cataloguing the basic constituents of our DNA ('genome sequencing') took ten years, over three billion dollars and was a multinational collaboration. Since then, our ability to sequence genomes has been finessed so much that by 2018 it is possible to explore the 20,000 or so human genes for under £1000, in a matter of days. Such testing offers clues to our past, present and future health, as well as information about how we respond to medications so that truly 'personalised medicine' is now moving closer to a reality.The impact of such a 'genomic era' is likely to have some level of impact on an increasingly large number of us, even if we are not directly using healthcare services ourselves. We explore how advancements in genetics are likely to be experienced by people, as patients, consumers and citizens; and urge policy makers to take stock of the pervasive nature of the technology as well as the human response to it.

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Section: Introductionmentioning

confidence: 99%

“…In order to interpret the significance of an individual finding, researchers need to see how this finding has expressed itself previously, by comparing it to datasets from thousands of other people 30 . The importance of sharing data is outlined by Lucassen and Montgomery (2017) who say:…”

Section: Introductionmentioning

confidence: 99%

Genetics in the 21st Century: Implications for patients, consumers and citizens

Roberts

Middleton

2017

F1000Res

Self Cite

View full text Add to dashboard Cite

The first human genome project, completed in 2003, uncovered the genetic building blocks of humankind. Painstakingly cataloguing the basic constituents of our DNA (‘genome sequencing’) took ten years, over three billion dollars and was a multinational collaboration. Since then, our ability to sequence genomes has been finessed so much that by 2017 it is possible to explore the 20,000 or so human genes for under £1000, in a matter of days. Such testing offers clues to our past, present and future health, as well as information about how we respond to medications so that truly ‘personalised medicine’ is now a reality. The impact of such a ‘genomic era’ is likely to have some level of impact on all of us, even if we are not directly using healthcare services ourselves. We explore how advancements in genetics are likely to be experienced by people, as patients, consumers and citizens; and urge policy makers to take stock of the pervasive nature of the technology as well as the human response to it.

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Your DNA, Your Say

Cited by 14 publications

References 12 publications

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

Genetics in the 21st Century: Implications for patients, consumers and citizens

Genetics in the 21st Century: Implications for patients, consumers and citizens

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