Assessing the Privacy Risks of Data Sharing in Genomics

Heeney, Catherine; Hawkins, Naomi; Vries, Jantina de; Boddington, Paula; Kaye, Jane

doi:10.1159/000294150

Cited by 99 publications

(98 citation statements)

References 46 publications

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“…19 Overall, also in view of the fact that direct benefits (clinical relevance) did not play any decisive role in motivating participation, the type of project we studied appears to have a very positive risk-benefit ratio in the eyes of participants. Only 13 out of 151 respondents mentioned risks that they were concerned about.…”

Section: Discussionmentioning

confidence: 80%

Motivations of participants in the citizen science of microbiomics: data from the British Gut Project

Savio

Prainsack

Buyx

2017

Genetics in Medicine

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PurposeThe establishment of databases for research in human microbiomics is dependent on the recruitment of sufficient numbers and diversity of participants. Factors that support or impede participant recruitment in studies of this type have not yet been studied. MethodsWe report the results of a survey aimed at establishing the motivations of participants in the British Gut Project, a research project that relies on volunteers to provide samples and to help fund the project. ResultsThe two most frequently reported motivations for participation were altruism and solidarity.Low education level appeared to be a recruitment obstacle. More than half of our 151 respondents said they would participate in further citizen science projects. 38% said they would not participate in a similar project if it was for-profit, or in a project that did not release datasets in repositories accessible to scientists (30%). 3 ConclusionsThe desire of citizens to take part in research was reported as a key motivation for participation in BGP. Such prosocial motivations can be mobilized for the establishment of large datasets for research.

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Section: Discussionmentioning

confidence: 80%

Motivations of participants in the citizen science of microbiomics: data from the British Gut Project

Savio

Prainsack

Buyx

2017

Genetics in Medicine

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“…5,13,15,20 In addition, genomic data may include risk-related information about further medical conditions, which may be used in ways that could be harmful to the participant or his/her relatives. 3,8,12 Our analysis of empirical studies showed that patients as well as the public recognized the possible risk of reidentification and were concerned about a negative impact on their insurance, employment, access to medical care and about stigmatization.…”

Section: Data Sharing and Privacy Protectionmentioning

confidence: 99%

“…This means that reidentification of the participants is a remote but potential risk of biobank-based genomic research. 5,[12][13][14][15] Third, genomic information is predictive of genomic dispositions to diseases 16,17 and might be used to discriminate against and stigmatize individuals with certain genomic conditions. 8 Additionally, genomic research results reveal information that might be of clinical importance to the research participants.…”

Section: Introductionmentioning

confidence: 99%

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

et al. 2015

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The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the development of best practice guidelines for research and recruiting participants. We systematically analyzed the empirical literature describing different stakeholders' views towards ethical questions with regard to type of consent, data sharing and return of incidental findings. Patients are more open to one-time general consent than the public. Only a small proportion desires recontact if the research aim changed. A broad consent model would prevent only a small proportion of patients from participating in research. Although professionals are concerned about a risk of reidentification, patients and the public support data sharing and find that the benefit of research outweighs the potential risk of reidentification. However, they desire detailed information about the privacy protection measures. Regarding the return of incidental findings, the public and professionals focus on clinically actionable results, whereas patients are interested in receiving as much information as possible. For professionals, concrete guidelines that help managing the return of incidental findings should be warranted. For this it would be helpful addressing the different categories -actionable, untreatable and inheritable diseases -upfront with patients and public. European Journal of Human Genetics (2015Genetics ( ) 23, 1607Genetics ( -1614 doi:10.1038/ejhg.2015; published online 4 March 2015 INTRODUCTIONTechnical advances in whole-genome sequencing enable the identification of genomic variations involved in the development of diseases, such as acquired mutations that are causally linked to cancer. 1,2 Improvements in disease prevention as well as diagnostic and therapeutic strategies may eventually lead to more precise, individually stratified health care. As most diseases are complex, which means that they are caused by multiple genomic factors, research is often based on large numbers of samples representing large numbers of individuals to arrive at statistically significant conclusions. In addition, genetic susceptibility alone is not sufficient to induce a complex disease; the causes also include different lifestyle and environmental factors. Therefore, to study complex diseases the interplay of all of these factors has to be considered. An efficient tool to achieve this is the creation of biobanks. Biobanks are defined as organized collections of human biological specimens comprised of cells, tissues, blood or DNA, which could be linked to clinical data and detailed individual lifestyle. Biobanks vary with respect to types and sources of samples and size, as well as research focus. Biobanks can be disease-specific or population-based, ranging from small collections to large-scale repositories. [3][4][5][6][7] Linking biological materials to personal data for enabling biobankbased genomic research raises several ethical questions that are currently debated. Th...

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“…3,4 However, genomic sequencing introduces new issues related to the scale of information made available to researchers. 5 First, genomic sequencing can query nearly all protein-coding regions of the human genome at once, including the majority of genes believed to have roles in disease. 6 Second, the significance of data generated from a human genome will almost certainly change over a lifetime.…”

Section: Introductionmentioning

confidence: 99%

Research participants’ attitudes towards the confidentiality of genomic sequence information

et al. 2013

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Respecting the confidentiality of personal data contributed to genomic studies is an important issue for researchers using genomic sequencing in humans. Although most studies adhere to rules of confidentiality, there are different conceptions of confidentiality and why it is important. The resulting ambiguity obscures what is at stake when making tradeoffs between data protection and other goals in research, such as transparency, reciprocity, and public benefit. Few studies have examined why participants in genomic research care about how their information is used. To explore this topic, we conducted semi-structured phone interviews with 30 participants in two National Institutes of Health research protocols using genomic sequencing. Our results show that research participants value confidentiality as a form of control over information about themselves. To the individuals we interviewed, control was valued as a safeguard against discrimination in a climate of uncertainty about future uses of individual genome data. Attitudes towards data sharing were related to the goals of research and details of participants' personal lives. Expectations of confidentiality, trust in researchers, and a desire to advance science were common reasons for willingness to share identifiable data with investigators. Nearly, all participants were comfortable sharing personal data that had been de-identified. These findings suggest that views about confidentiality and data sharing are highly nuanced and are related to the perceived benefits of joining a research study.

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Assessing the Privacy Risks of Data Sharing in Genomics

Cited by 99 publications

References 46 publications

Motivations of participants in the citizen science of microbiomics: data from the British Gut Project

Motivations of participants in the citizen science of microbiomics: data from the British Gut Project

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

Research participants’ attitudes towards the confidentiality of genomic sequence information

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