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 problems14 Benefits to the public15 Privacy, confidentiality and risk of data reidentification14 15 30 Lack of understanding and awareness15 Participants with higher mean age were substantially less worried about privacy and confidentiality than other groups14 The research being congruent with the participants’ values15
97% were supportive of sharing data postproject36 ‘To contribute’ to advancements in medicine14 Benefit to participants or immediate community15 Concerns about misuse of data15 Lack of controllability in releasing data14 Willingness lower among individuals from under-represented minorities11 The research being in the public’s interest15
Participants are open to and understand the advantages of data sharing15 To serve the greater good14 Benefits to science or research15 Concern that personal information could be mined from genomic data14 Sharing with commercial companies14 Willingness lower among individuals with privacy and confidentiality concerns11 Samples are de-identified11 30 36
Willingness for data to be shared was high11 Accelerating research advancement14 Concerns about potential use of their data by for-profit entities14 Sharing genomic data with a broader group of researchers and for a variety of research purposes14 Willingness to endorse data sharing increases with trust in institutions and researchers14 Respecting privacy of data11 14
Broad consent was often preferred over tiered or study-specific consent, particularly when broad consent was the only option11 Advancement of innovation30 Re-use of data for purposes that participants do not agree on30 Distrust of the government as an oversight body for genetic research data35 Risks are mitigated15
90% were supportive to share data with universities postproject36 Maximising the value of resources14 Fear of using data for discriminatory purposes 14 Participants with some college or a college degree were more likely to choose restricted data release14 Highly secure database30 36
56% were supportive to share data with commercial companies postproject36 Reducing waste in research30 Stigmatisation or repercussions15 Personal perceptions of sensitivity of genomic data were influenced by elements such as race, gender, age, marital status and/or educational level14 Postproject 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 exploitation15 Reputation of and trust in research organisation35 Data access agreements30
Willingness lower when pharmaceutical companies had access to data11 Researchers 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 control14 Need 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 data15 Participants having understood that their data could be shared (transparency)15
Participants desire to be involved in the data sharing process15 Information on consequences of a breach of protection and penalties35
To know what organisation/agency has oversight responsibilities for genetic research data as35 Participants 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