Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study

Abstract

Objective: To assess the willingness of older Swiss adults to share genetic data for research purposes and to investigate factors that might impact their willingness to share data. Methods: Semi-structured interviews were conducted among 40 participants (19 male and 21 female) aged between 67 and 92 years, between December 2013 and April 2014 attending the Seniorenuniversität Zürich, Switzerland. All interviews were audio-recorded, transcribed verbatim, and anonymized. For the analysis of the interviews, an initial coding scheme was developed, refined over time, and applied afterwards to all interviews. Results: The majority of participants were in favor of placing genetic data to research’s disposal. Participant’s motivations to share data were mainly driven by altruistic reasons and by contributing to the greater good. Furthermore, several factors which might impact the willingness to share data such as sharing data with private companies, generational differences, differences between sharing genetic data or health data, and sharing due to financial incentives were highlighted. Last, some participants indicated concerns regarding data sharing such as misuse of data, the fear of becoming a transparent citizen, and data safety. However, 20% of the participants express confidence in data protection. Even participants who were skeptical in the beginning of the interviews admitted the benefits of data sharing. Discussion: Overall, this study suggests older citizens are willing to share their data for research purposes. However, most of them will only contribute if their data is appropriately protected and if they trust the research institution to use the shared data responsibly. More transparency and detailed information regarding the data usage are urgently needed. There is a great need to increase the engagement of older adults in research since they present a large segment of our society – one which is often underexamined in research. Conclusion: Increased focus on general public engagement, especially of older adults, in scientific research activities known as “citizen science” is needed to further strengthen the uptake of personalized medicine.

Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

“…21 In the original studies reviewed, advantages and potential benefits of data sharing were generally recognised by public and patient participants. 22 29 Data sharing was believed to enable the study of long-term treatment effects and rare events, as well as the study of large numbers of people, 24 to improve diagnosis 25 on September 11, 2020 by guest. Protected by copyright.…”

“…Protected by copyright. Altruistic reasons and contributing to the greater good 25 'Discussants recognised the benefits of datasharing' 29 42.4% lacked confidence in data security and privacy 24 Data sharing with private companies 25 Findings suggested that males and older people were more likely to consent to a review of their medical data (systematic review) 27 De-identification of personal information as a top privacy measure (89.4%) 24 Widespread willingness to share patient data for research 12…”

“…Finding new treatments and improving diagnosis 25 51% would worry about their privacy 31 Respondents were strongly averse to health insurance companies, private sector pharmaceutical companies and academic researchers viewing their data 23 Generational differences impacted willingness 25 Consent procedures should be audited and an ombudsman should oversee the governance of the use of personal care information for research 26 The majority of participants were in favour of placing genetic data to research's disposal 25 No expectation of an immediate impact or beneficial return but ultimately wanting to help the next generation 25 Respondents agreed that storage was important for improving treatment quality (75.5%), preventing epidemics (63.9%) and reducing delays (58.9%) 23 Concerns about privacy and confidentially 13 29 Willingness to participate was associated with selfidentified white race 31 Acceptance of alternative consent models conditional on a number of factors, including: security and confidentiality, no inappropriate commercialisation or detrimental use, transparency, independent overview, the ability to object to any processing considered to be inappropriate or particularly sensitive 37…”

Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism

“…Under the current national policy, patients that enter a care facility (ambulatory or hospital) should be provided with a consent form that explains them how their data collected during clinical care might be reused for research and then asks them whether they would consent to the secondary use of their data. structured interviews was conducted in 2017 to investigate the attitudes of older adults towards the sharing of genetic data (Mählmann et al, 2017). In this case, participants were split: half of them considered that the two types of data should be treated differently; the other half expressed their opposition to any differentiations between genetic and non-genetic data.…”

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

“…Few prior studies explicitly explore which data sharing practices people are willing to accept, all things considered, as opposed to what they prefer. 33,34 Furthermore, the views of Asian populations around these issues are under-represented in the literature. Just as European genomes are over-represented in genomics 35 , the majority of qualitative and quantitative studies about public attitudes and perspectives of genomics have been conducted in Europe, North America and Australia.…”