Willingness to donate genomic and other medical data: results from Germany

Voigt, Torsten H.; Holtz, Verena; Niemiec, Emilia; Howard, Heidi; Middleton, Anna; Prainsack, Barbara

doi:10.1038/s41431-020-0611-2

Cited by 35 publications

(35 citation statements)

References 17 publications

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“…Upon comparison, similar surveys from other countries demonstrate higher rates: with 86% in Italy [ 7 ], 86% in Sweden [ 8 ], 83.5% in Korea [ 9 ], 70.4% in Germany [ 10 ]. Others show similar rates: with 56% in Germany [ 11 ], and 54% in the US [ 12 ]. At the same time, a global survey of 36,268 respondents across 22 countries indicated that willingness to donate data to doctors, and non-profit and for-profit researchers, was generally “low” (47.4%), with variation among countries (from 29% in Japan up to 63.7% in Mexico) [ 13 ].…”

Section: Discussionmentioning

confidence: 93%

Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

et al. 2021

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This paper reports survey findings on the Swiss public’s willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (34.1% response rate). The majority of respondents were aware of research using human biological samples (71.0%) and held a positive opinion towards this type of research (62.4%). Of all respondents, 53.6% indicated that they would be willing to participate in a personalized health research project. Willingness to participate was higher in younger, higher educated, non-religious respondents with a background in the health sector. Respondents were more willing to provide ‘traditional’ types of health data, such as health questionnaires, blood or biological samples, as opposed to social media or app-related data. All respondents valued the return of individual research results, including risk for diseases for which no treatment is available. Our findings highlight that alongside general positive attitudes towards personalized health research using data and samples, respondents have concerns about data privacy and re-use. Concerns included potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes. The findings of this large-scale survey can inform Swiss research institutions and assist policymakers with adjusting practices and developing policies to better meet the needs and preferences of the public. Efforts in this direction could focus on research initiatives engaging in transparent communication, education, and engagement activities, to increase public understanding and insight into data sharing activities, and ultimately strengthen personalized health research efforts.

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Section: Discussionmentioning

confidence: 93%

Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

et al. 2021

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“…One reason for this might be that the early perception as a surveillance tool for authorities left many people reluctant to use contact tracing apps. The observed tendency to put these contact tracing apps into a broader context of technological surveillance tools and privacy concerns might have triggered general concerns of privacy that are known to be particularly important in the German-speaking areas [ 70 ], and the same has been reported in the French context [ 18 ]. Newspapers reporting the use of contact tracing and tracking apps in Asian countries might have further deepened the impression that these applications are not aligned with democratic principles of individual privacy and freedom since these applications were considered by interview participants and newspapers alike to be not compatible with privacy regulations and democratic principles as understood in the European context.…”

Section: Discussionmentioning

confidence: 99%

Early Perceptions of COVID-19 Contact Tracing Apps in German-Speaking Countries: Comparative Mixed Methods Study

Zimmermann¹,

Fiske²,

Prainsack³

et al. 2021

J Med Internet Res

Self Cite

103

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Background The main German-speaking countries (Germany, Austria, and Switzerland) have implemented digital contact tracing apps to assist the authorities with COVID-19 containment strategies. Low user rates for these apps can affect contact tracing and, thus, its usefulness in controlling the spread of the novel coronavirus. Objective This study aimed to assess the early perceptions of people living in the German-speaking countries and compare them with the frames portrayed in the newspapers during the first wave of the COVID-19 pandemic. Methods We conducted qualitative interviews with 159 participants of the SolPan project. Of those, 110 participants discussed contact tracing apps and were included in this study. We analyzed articles regarding contact tracing apps from 12 newspapers in the German-speaking countries. Results Study participants perceived and newspaper coverage in all German-speaking countries framed contact tracing apps as governmental surveillance tools and embedded them in a broader context of technological surveillance. Participants identified trust in authorities, respect of individual privacy, voluntariness, and temporary use of contact tracing apps as prerequisites for democratic compatibility. Newspapers commonly referenced the use of such apps in Asian countries, emphasizing the differences in privacy regulation among these countries. Conclusions The uptake of digital contact tracing apps in German-speaking countries may be undermined due to privacy risks that are not compensated by potential benefits and are rooted in a deeper skepticism towards digital tools. When authorities plan to implement new digital tools and practices in the future, they should be very transparent and proactive in communicating their objectives and the role of the technology—and how it differs from other, possibly similar, tools. It is also important to publicly address ethical, legal, and social issues related to such technologies prior to their launch.

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“…In the survey ‘Your DNA, Your Say’, 52% of the participants from the USA, UK, Canada and Australia held this point of view 25 . German participants holding an exceptionalist position argued that the genome is unique, is the most personal information of individuals and belongs to them 29 . Furthermore, a recent qualitative study indicated that participants consider genomic data as exceptional not because of an inherent difference, but merely because of its uses outside of health care and its familial implications 8…”

Section: Discussionmentioning

confidence: 99%

“…For example, when asked about their motivation to participate in genomic research, participants from several studies mentioned both benefits for their health and the health of their relatives, their descendants and the global population 8‐23 . While some participants in earlier studies highlighted the perception of the genome as a common good by referring to altruism, solidarity and even responsibility as citizens and human beings, 8‐29 other participants emphasized an individualistic understanding of the genome by referring to concepts such as reciprocity, respect for an individual's autonomy, 29 informed consent, 7,8 transparency and being up‐to‐date on the uses of their data and new genetic results 20‐23 …”

Section: Discussionmentioning

confidence: 99%

Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information

Mayeur

Hoof

2021

Health Expectations

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Background The development of large data sets, including genomic data, coupled with rapid advances in personalized medicine where citizens increasingly face complex choices about the use of their genomic information implies that citizens are essential stakeholders in genomics. They should be engaged in the ethical, legal and societal issues to produce a framework that fosters trust and allows them to guide the technology based on their values. Objective This article highlights that citizens' conceptions of the human genome inform about and make sense of their main values regarding the use of genomic information, which is critical for policymakers, experts and stakeholders to understand to maintain the public support in genomics. Method Through an inductive thematic approach, we reanalysed data collected for the Belgian citizen forum, which aimed to produce recommendations for the Ministry of Public Health and other stakeholders. Results Citizens expressed four conceptions of the genome that determined which uses of genomic information they supported: the most intimate part of individuals; ‘I am more than my genome’; the individual's property vs the common good; and uncertainty and fear. Conclusion Diversity in their conceptions reveals remaining conflicts of values among citizens, mainly regarding a conception of the genome as an individual property or a common good. However, despite differing conceptions, shared values emerged such as solidarity, privacy, no genetic discrimination and the right to an open future, where individual and common interests coexist. Patient or public contribution The panel of the citizen forum consisted of 32 citizens.

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Willingness to donate genomic and other medical data: results from Germany

Cited by 35 publications

References 17 publications

Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

Early Perceptions of COVID-19 Contact Tracing Apps in German-Speaking Countries: Comparative Mixed Methods Study

Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information

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