Big Data, precision medicine and private insurance: A delicate balancing act
In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2019-03-01
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| Series: | Big Data & Society |
| Online Access: | https://doi.org/10.1177/2053951719830111 |
| _version_ | 1818280556915326976 |
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| author | Alessandro Blasimme Effy Vayena Ine Van Hoyweghen |
| author_facet | Alessandro Blasimme Effy Vayena Ine Van Hoyweghen |
| author_sort | Alessandro Blasimme |
| collection | DOAJ |
| description | In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, 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. |
| first_indexed | 2024-12-12T23:51:07Z |
| format | Article |
| id | doaj.art-3085f9caafed4a8c88976f820739b23c |
| institution | Directory Open Access Journal |
| issn | 2053-9517 |
| language | English |
| last_indexed | 2024-12-12T23:51:07Z |
| publishDate | 2019-03-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Big Data & Society |
| spelling | doaj.art-3085f9caafed4a8c88976f820739b23c2022-12-22T00:06:41ZengSAGE PublishingBig Data & Society2053-95172019-03-01610.1177/2053951719830111Big Data, precision medicine and private insurance: A delicate balancing actAlessandro BlasimmeEffy VayenaIne Van HoyweghenIn this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, 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.https://doi.org/10.1177/2053951719830111 |
| spellingShingle | Alessandro Blasimme Effy Vayena Ine Van Hoyweghen Big Data, precision medicine and private insurance: A delicate balancing act Big Data & Society |
| title | Big Data, precision medicine and private insurance: A delicate balancing act |
| title_full | Big Data, precision medicine and private insurance: A delicate balancing act |
| title_fullStr | Big Data, precision medicine and private insurance: A delicate balancing act |
| title_full_unstemmed | Big Data, precision medicine and private insurance: A delicate balancing act |
| title_short | Big Data, precision medicine and private insurance: A delicate balancing act |
| title_sort | big data precision medicine and private insurance a delicate balancing act |
| url | https://doi.org/10.1177/2053951719830111 |
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