Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

Shabani, Mahsa; Bezuidenhout, Louise; Borry, Pascal

doi:10.1586/14737159.2014.961917

Cited by 91 publications

(157 citation statements)

References 62 publications

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“…In a review, Shabani et al [28] identified five studies showing that accelerating advancements in research and maximizing the value of resources were underlying reasons that tipped the balance and motivated participants to share their data. First, Kerath et al [36] showed that participants had a generally positive view of genetic research and valued their personal participation positively.…”

Section: Discussionmentioning

confidence: 99%

“…In contrast, trust in the institution was an important factor in participants’ endorsement of data sharing [28], since trust often outweighs potential concerns [12]. Previous research considered trust as an antecedent, a consequence, a mediator or moderator to privacy concern and the intention to share data.…”

Section: Discussionmentioning

confidence: 99%

“…Often, the scope of research the company will conduct with the genetic data is not specifically described [26]. Previous studies investigating participants’ attitudes and motivations indicated that participants are willing to share their genetic information, notwithstanding concerns regarding data protection, data safety, privacy issues, misuse, and governmental involvement [27, 28]. The main motivator of sharing data was the opportunity to participate in research [29].…”

Section: Introductionmentioning

confidence: 99%

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

Mählmann

Halfmann

Wyl

et al. 2017

Public Health Genomics

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Mählmann

Halfmann

Wyl

et al. 2017

Public Health Genomics

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“…In this population, divorced or separated participants were significantly more likely to view the need for a federal coordinating center, rather than the original researcher, to maintain the link to their deidentified data. Views concerning the sensitivity of genetic data have been previously shown to vary by marital status: divorced, widowed, separated, or never married participants are significantly more likely to endorse restricted rather than public data access (Shabani et al 2014).…”

Section: Discussionmentioning

confidence: 99%

De-identified genomic data sharing: the research participant perspective

et al. 2017

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Combining datasets into larger and separate datasets is becoming increasingly common, and personal identifiers are often removed in order to maintain participant anonymity. Views of research participants on the use of deidentified data in large research datasets are important for future projects, such as the Precision Medicine Initiative and Cancer Moonshot Initiative. This quantitative study set in the USA examines participant preferences and evaluates differences by demographics and cancer history. Study participants were recruited from the Northwest Cancer Genetics Registry and included cancer patients, their relatives, and controls. A secure online survey was administered to 450 participants. While the majority participants were not concerned about personal identification when participating in a genetic study using de-identified data, they expressed their concern that researchers protect their privacy and information. Most participants expressed a desire that their data should be available for as many research studies as possible, and in doing so, they would increase their chance of receiving personal health information. About 20% of participants felt that a link should not be maintained between the participant and their de-identified data. Reasons to maintain a link included an ability to return individual health results and an ability to support further research. Knowledge of participants' attitudes regarding the use of data into a research repository and the maintenance of a link to de-identified data is critical to the success of recruitment into future genomic research projects.

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“…3,4 Despite the perceived benefits, sharing individual-level genomic data has triggered a number of concerns for research participants. 5 Notably, privacy of the data subjects could be endangered, as the insufficiency of the traditional approaches such as de-identification of genomic data sets has been demonstrated. [6][7][8] Individuals have voiced concerns over potential harmful uses of data that could result from privacy breaches such as discriminatory uses by employers or insurance companies.…”

Section: Introductionmentioning

confidence: 99%

Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts

2016

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Facilitating the responsible access to genomic research data is an emerging ethical and scientific imperative. Data Access Committees (DACs) assess the ethical footing and scientific feasibility of the data access requests and evaluate the qualification of applicants to ensure they are bona fide researchers. Through semi-structured interviews, we explored the opinions and experiences of 20 DAC members and experts concerning the users' qualification criteria and mechanisms to hold users accountable. According to our respondents, such evaluation is necessary to ensure applicants are trustworthy, meet a certain level of expertise or experience and are aware of the rules and the associated concerns with genomic data sharing. The respondents noted, however, that the qualification criteria are fragmented or are poorly delineated at times. Thus, developing qualification criteria seems vital for an objective, fair and responsible access procedure. Similarly, the access review will benefit from using common ways of verifying the users' affiliations. Furthermore, some DAC members expressed concern over the uncertain oversight of downstream data use, in particular where data are shared across borders. DAC members and experts did not consider current sanctions and enforcement procedures to be crystal clear. Therefore, data sharing policies should address this gap by establishing proportionate sanctions both against data producers and data users' non-compliance. Users' home institutes will need to have an active role in keeping oversight on the downstream data uses, considering their ultimate responsibility if wrongdoings happen.

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Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

Abstract: This analysis indicates that future policy responses and recruitment practices should be attentive to a wide variety of concerns in order to promote both responsible and progressive research.

Cited by 91 publications

References 62 publications

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

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

De-identified genomic data sharing: the research participant perspective

Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts

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