Table 4

Patients’ and public views and attitudes towards the sharing of health data for research

Overall willingness to shareMotivations to sharePerceived benefits of data sharingPerceived risks of data sharingBarriers to share dataFactors affecting willingness to share dataConditions for sharing
39% approved broad access by researchers and other professions30‘To help’ people who have similar health problems14Benefits to the public15Privacy, confidentiality and risk of data reidentification14 15 30Lack of understanding and awareness15Participants with higher mean age were substantially less worried about privacy and confidentiality than other groups14The research being congruent with the participants’ values15
97% were supportive of sharing data postproject36‘To contribute’ to advancements in medicine14Benefit to participants or immediate community15Concerns about misuse of data15Lack of controllability in releasing data14Willingness lower among individuals from under-represented minorities11The research being in the public’s interest15
Participants are open to and understand the advantages of data sharing15To serve the greater good14Benefits to science or research15Concern that personal information could be mined from genomic data14Sharing with commercial companies14Willingness lower among individuals with privacy and confidentiality concerns11Samples are de-identified11 30 36
Willingness for data to be shared was high11Accelerating research advancement14Concerns about potential use of their data by for-profit entities14Sharing genomic data with a broader group of researchers and for a variety of research purposes14Willingness to endorse data sharing increases with trust in institutions and researchers14Respecting privacy of data11 14
Broad consent was often preferred over tiered or study-specific consent, particularly when broad consent was the only option11Advancement of innovation30Re-use of data for purposes that participants do not agree on30Distrust of the government as an oversight body for genetic research data35Risks are mitigated15
90% were supportive to share data with universities postproject36Maximising the value of resources14Fear of using data for discriminatory purposes 14Participants with some college or a college degree were more likely to choose restricted data release14Highly secure database30 36
56% were supportive to share data with commercial companies postproject36Reducing waste in research30Stigmatisation or repercussions15Personal perceptions of sensitivity of genomic data were influenced by elements such as race, gender, age, marital status and/or educational level14Postproject Data Access Committee should involve a researcher from the original research project, a clinician, patient representative, and a participant in the original study36
Fear of exploitation15Reputation of and trust in research organisation35Data access agreements30
Willingness lower when pharmaceutical companies had access to data11Researchers of original study to monitor data used by other researchers36
Being asked for consent for each study would make participants (81%) feel ‘respected and involved’, and 74% agreed that they would feel that they ‘had control14Need for transparency in data sharing and monitoring policies35
Participants desire to be notified when their data are (re)used and to be informed of the results of studies using their data15Participants having understood that their data could be shared (transparency)15
Participants desire to be involved in the data sharing process15Information on consequences of a breach of protection and penalties35
To know what organisation/agency has oversight responsibilities for genetic research data as35Participants want to know more about how the data will be shared and with whom35
Information to participants30
Logistics of biobanks are communicated11
Knowing more about how the data will be shared and with whom14
Trust in the ability of the original institution to carry out the oversight tasks14
Sanctions for misuse30