Patients’ and public views and attitudes towards the sharing of health data for research
| Overall willingness to share | Motivations to share | Perceived benefits of data sharing | Perceived risks of data sharing | Barriers to share data | Factors affecting willingness to share data | Conditions 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 |