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

Mählmann L1,2, Schee Gen Halfmann S2, von Wyl A3, Brand A2,4.

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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.

KEYWORDS:

Altruism; Citizen science; Data protection; Data sharing; Direct-to-consumer personal genomics; Older adults; Personalized medicine; Privacy; Research participation