Genes wide open: Data sharing and the social gradient of genomic privacy

Haeusermann, Tobias; Fadda, Marta; Blasimme, Alessandro; Tzovaras, Bastian Greshake; Vayena, Effy

doi:10.1080/23294515.2018.1550123

Cited by 19 publications

(25 citation statements)

References 76 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The implementation of the General Data Protection Regulation (GDPR) engenders a greater awareness of the value of data, issues of ownership and privacy and highlights potential risks to participants [43]. Haeusermann et al [26] explored the reasons why individuals shared their own personal health data online. They found that participants who were openly sharing their own data continued to have concerns about privacy, and that the motivation for sharing despite this risk was that it could lead to new developments.…”

Section: Introductionmentioning

confidence: 99%

Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

Courbier

Dimond

Bros-Facer

2019

Orphanet J Rare Dis

144

View full text Add to dashboard Cite

Background The needs and benefits of sharing health data to advance scientific research and improve clinical benefits have been well documented in recent years, specifically in the field of rare diseases where knowledge and expertise are limited and patient populations are geographically dispersed. Understanding what patients want and need from rare disease research and data sharing is important to ensure their participation and engagement in the process, and to ensure that these wishes and needs are embedded within research design. EURORDIS-Rare Diseases Europe regularly surveys the rare disease community to identify its perspectives and needs on a number of issues in order to represent rare disease patients and be their voice within European and International initiatives and policy developments. Here, we present key findings from a large quantitative survey conducted with patients with rare diseases and family members as part of a continuous evidence-based advocacy process developed at EURORDIS. The aim of this survey was to explore patient and family perspectives on data sharing and data protection in research and healthcare settings and develop relevant recommendations to support shaping of future data sharing initiatives in rare disease research. This survey, translated into 23 languages, was carried out via the Rare Barometer Programme and was designed to be accessible to a diverse population with a wide range of education backgrounds. It was widely disseminated via patient organisations worldwide to ensure that a wide range of voices and experiences were represented. Main findings Rare disease patients, regardless of the severity of their disease and their socio-demographic profile, are clearly supportive of data sharing to foster research and improve healthcare. However, rare disease patients’ willingness to share their data does come with specific requirements in order to respect their privacy, choices and needs for information regarding the use of their data. Conclusions To ensure sustainability and success of international data sharing initiatives in health and research for rare diseases, appropriate legislations need to be implemented and multi-stakeholder efforts need to be pursued to foster cultural and technological changes enabling the systematic integration of patients’ preferences regarding sharing of their own health data. Electronic supplementary material The online version of this article (10.1186/s13023-019-1123-4) contains supplementary material, which is available to authorized users.

show abstract

Section: Introductionmentioning

confidence: 99%

Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

Courbier

Dimond

Bros-Facer

2019

Orphanet J Rare Dis

144

View full text Add to dashboard Cite

show abstract

“…Yet, social groups having more to fear in terms of discrimination may be discouraged from participating. This would create a socio-economic gradient on access to medically relevant information, therefore potentially increasing health inequalities (Hausermann et al, 2018). Analogously, voluntary disclosure may induce insurers to increase premiums for non-disclosers, thus putting less affluent people at a further disadvantage.…”

Section: Trustworthiness: To Encourage Research Participationmentioning

confidence: 99%

Big Data, precision medicine and private insurance: A delicate balancing act

Blasimme

Hoyweghen

2019

Big Data & Society

Self Cite

View full text Add to dashboard Cite

In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policyholders , can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles-trustworthiness, openness and evidence-to address this problem and tame its potentially harmful effects on the development of precision medicine and, more generally, on the advancement of medical science.

show abstract

“…Consumer perceptions of genetic information privacy vary depending on how well DTC-GT consumers read and comprehend privacy policies and terms of use agreements [22]. The United States National Library of Medicine (US NLM) understands how this variation may exist and has provided formal recommendations to address it.…”

Section: Dtc-gt Consumer Comprehension Of Terms Of Use Agreements mentioning

confidence: 99%

“…Critchley et al discovered, among the consumer concerns they identified, that the least trusted aspects of DTC-GT companies related to matters of consumer privacy. Adding to this finding is that of Haeusermann et al, who found that some DTC-GT consumers perceived privacy is an “illusion” [22]. This perception was based on the notion that electronic genetic information files can be easily hacked [22].…”

Section: Consumer Concerns and Perceptions About Dtc-gt Informatiomentioning

confidence: 99%

“…Adding to this finding is that of Haeusermann et al, who found that some DTC-GT consumers perceived privacy is an “illusion” [22]. This perception was based on the notion that electronic genetic information files can be easily hacked [22]. This particular concern lends true or can be substantiated by recent events involving electronic health record breaches, which have affected over half of the United States’ (US) population [29,30].…”

Section: Consumer Concerns and Perceptions About Dtc-gt Informatiomentioning

confidence: 99%

See 1 more Smart Citation

Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives

Hendricks‐Sturrup

2019

JPM

View full text Add to dashboard Cite

Direct-to-consumer genetic testing (DTC-GT) companies are engaging health consumers in unprecedented ways and leveraging the genetic information they collect to further engage health companies. This has produced controversy about DTC-GT consumer expectations, standards, and perceptions of privacy. In this commentary, we highlight recent events involving DTC-GT companies and controversy about privacy that followed those events and discuss recent studies that have explored DTC-GT consumer concerns about privacy. We discuss DTC-GT company standards of upholding consumer privacy and the general accessibility of DTC-GT company terms of use agreements and privacy policies that are written at reading levels above that of many consumers. We conclude that broader discussions and more research are needed to identify DTC-GT consumer concerns about and expectations of privacy. We anticipate that our recommendations will advance discussions on consumer privacy expectations and protections in an era of increasing engagement in DTC-GT.

show abstract

Genes wide open: Data sharing and the social gradient of genomic privacy

Cited by 19 publications

References 76 publications

Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

Big Data, precision medicine and private insurance: A delicate balancing act

Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives

Contact Info

Product

Resources

About