Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Middleton A

PROVIDER: S-EPMC7080803 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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

Middleton Anna A Milne Richard R Howard Heidi H Niemiec Emilia E Robarts Lauren L Critchley Christine C Nicol Dianne D Prainsack Barbara B Atutornu Jerome J Vears Danya F DF Smith James J Steed Claire C Bevan Paul P Scott Erick R ER Bobe Jason J Goodhand Peter P Kleiderman Erika E Thorogood Adrian A Morley Katherine I KI

European journal of human genetics : EJHG 20191129 4

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' compa ...[more]

PMID: 31784701

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Project description:BACKGROUND:Since 1998, China has gradually moved toward voluntary uncompensated blood donation. In some cities, the shortage of platelets has been noticeably severe. Mutual assistance that collects blood from one's family and social networks is a potential solution. The measure, however, turned out problematic. There are donors who choose to donate platelets over whole blood without compensations, and donate platelets directly to blood banks instead of via the mutual assistance system. This study explores reasons behind their choices qualitatively. METHODS:This report is based on data conducted from January to February 2018; 25 uncompensated regular platelet donors were interviewed. The blood component donation service team in Guangzhou facilitated the data collection process and referred prospectively eligible blood donors to our research team. The interviews took about 30 min to two hours to complete. The qualitative data were analyzed by using the software ATLAS.ti 8. RESULTS:Platelet donation takes a much long time than whole blood donation and requires complicated processes. It may also cause discomfort as the other blood components are returned to the body, causing physical and psychological distress due to worries about contamination. Thus, platelet donation tends to involve higher time and psychological costs than whole blood donation. Yet, it has short collection intervals that allows for more frequent donations, and urgency of a severer shortage than whole blood. Hence, regular platelet donors may feel higher significance in platelet donation than whole blood donation, with the belief that more lives would be saved. Some whole blood donors thus switched to become platelet donors. Mutual assistance blood donation was not chosen by the participants for platelet donation, because such donations may exert moral pressure to both the donors and recipients. Furthermore, "acquaintance" has been loosely defined; the system has sometimes been manipulated to become profit-making monetary transactions. It hence failed. CONCLUSIONS:The practice of platelet donation reinforces the understanding that blood donation is a gift giving process performed among strangers. A safe and sustainable voluntary blood supply can only be secured in the absence of monetary transactions and moral pressure.

Project description:PurposeOncology drugs are often approved for multiple indications, for which their clinical benefit varies. Aligning a single price to this differing value remains a challenge. This study examines the clinical and economic value, price, and reimbursement of multi-indication cancer drugs across seven countries, representing different approaches to value assessment, pricing, and coverage decisions: the USA, Germany, France, England, Canada, Australia, and Scotland.MethodsTwenty-five multi-indication cancer drugs across 100 indications were identified with US Food and Drug Administration (FDA) approval between 2009 and 2019. For each indication data on Health Technology Assessment (HTA) recommendations, disease prevalence, and drug prices were obtained. Quality-adjusted life years (QALYs) gained, disease prevalence, list prices, and HTA outcomes were then compared across indications and regions.ResultsFirst approved indications provide a higher clinical benefit whilst targeting a smaller patient group than indication extensions. Quality-adjusted life year gains were higher for first (0.99, 95% CI 0.05-3.25) compared to second (0.51, 95% CI 0.02-1.63, p < 0.001) and third (0.58, 95% CI 0.05-2.07, p < 0.01) approved indications. Disease prevalence per 100,000 inhabitants was 20.7 (95% CI 0.2-63.3) for first compared to 27.1 (95% CI 1.5-109.6, p = 0.907) for second and 128.3 (95% CI 3.1-720.1, p < 0.001) for third approved indications. With each approved indication drug prices declined in Germany and France, remained constant in the UK, Canada, and Australia, whilst they increased in the USA. Negative HTA outcomes, clinical restrictions, and managed entry agreements (MEAs) were more frequently observed for indication extensions.ConclusionsResults suggest that indication development is prioritised according to clinical value and disease prevalence. Countries employ different mechanisms to account for each indication's differential benefit, e.g., weighted-average prices (Germany, France, Australia), differential discounts (England, Scotland), clinical restrictions, and MEAs (England, Scotland, Australia, Canada). Value-based indication-specific pricing can help to align the benefit and price for multi-indication cancer drugs.

Dataset Information

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

Publications

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

Similar Datasets

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