Privacy Protection, Personalized Medicine, and Genetic Testing
This paper explores how state genetic privacy laws affect the diffusion of personalized medicine, using data on genetic testing for cancer risks. State genetic privacy regimes employ and combine up to three alternative approaches to protecting patient privacy: Rules requiring that an individual is n...
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| Veröffentlicht in: | Management science 2018-10, Vol.64 (10), p.4648-4668 |
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| container_title | Management science |
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| creator | Miller, Amalia R. Tucker, Catherine |
| description | This paper explores how state genetic privacy laws affect the diffusion of personalized medicine, using data on genetic testing for cancer risks. State genetic privacy regimes employ and combine up to three alternative approaches to protecting patient privacy: Rules requiring that an individual is notified about potential privacy risks; rules restricting discriminatory usage of genetic data by employers or insurance companies; and rules limiting redisclosure without the consent of the individual. We find empirically that approaches to genetic and health privacy that give users control over redisclosure encourage the spread of genetic testing, but that notification deters individuals from obtaining genetic tests. We present some evidence that the latter reflects costs imposed on the supply of genetic testing by hospitals. We find no effects of state genetic antidiscrimination laws on genetic testing rates.
The online appendix is available at
https://doi.org/10.1287/mnsc.2017.2858
.
This paper was accepted by Chris Forman, information systems. |
| doi_str_mv | 10.1287/mnsc.2017.2858 |
| format | Article |
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The online appendix is available at
https://doi.org/10.1287/mnsc.2017.2858
.
This paper was accepted by Chris Forman, information systems.</description><identifier>ISSN: 0025-1909</identifier><identifier>EISSN: 1526-5501</identifier><identifier>DOI: 10.1287/mnsc.2017.2858</identifier><language>eng</language><publisher>Linthicum: INFORMS</publisher><subject>Alternative approaches ; Analysis ; Antidiscrimination ; application contexts/sectors ; Confidentiality ; Data collection ; General Data Protection Regulation ; Genetic discrimination ; Genetic screening ; Genetic testing ; Genetics ; Health insurance ; healthcare ; Hospitals ; information systems ; Insurance companies ; Laws, regulations and rules ; Leaking of information ; Notification ; Precision medicine ; Privacy ; regulation ; treatment</subject><ispartof>Management science, 2018-10, Vol.64 (10), p.4648-4668</ispartof><rights>2017 INFORMS</rights><rights>COPYRIGHT 2018 Institute for Operations Research and the Management Sciences</rights><rights>Copyright Institute for Operations Research and the Management Sciences Oct 2018</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c528t-5a0d0e47df2ad0b15e6604eec8b2837b4dc9c889661b370f2ed9273580dba42b3</citedby><cites>FETCH-LOGICAL-c528t-5a0d0e47df2ad0b15e6604eec8b2837b4dc9c889661b370f2ed9273580dba42b3</cites><orcidid>0000-0003-0094-5226 ; 0000-0002-1847-4832</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/48748320$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://pubsonline.informs.org/doi/full/10.1287/mnsc.2017.2858$$EHTML$$P50$$Ginforms$$H</linktohtml><link.rule.ids>314,780,784,803,3692,27924,27925,58017,58250,62616</link.rule.ids></links><search><creatorcontrib>Miller, Amalia R.</creatorcontrib><creatorcontrib>Tucker, Catherine</creatorcontrib><title>Privacy Protection, Personalized Medicine, and Genetic Testing</title><title>Management science</title><description>This paper explores how state genetic privacy laws affect the diffusion of personalized medicine, using data on genetic testing for cancer risks. State genetic privacy regimes employ and combine up to three alternative approaches to protecting patient privacy: Rules requiring that an individual is notified about potential privacy risks; rules restricting discriminatory usage of genetic data by employers or insurance companies; and rules limiting redisclosure without the consent of the individual. We find empirically that approaches to genetic and health privacy that give users control over redisclosure encourage the spread of genetic testing, but that notification deters individuals from obtaining genetic tests. We present some evidence that the latter reflects costs imposed on the supply of genetic testing by hospitals. We find no effects of state genetic antidiscrimination laws on genetic testing rates.
The online appendix is available at
https://doi.org/10.1287/mnsc.2017.2858
.
This paper was accepted by Chris Forman, information systems.</description><subject>Alternative approaches</subject><subject>Analysis</subject><subject>Antidiscrimination</subject><subject>application contexts/sectors</subject><subject>Confidentiality</subject><subject>Data collection</subject><subject>General Data Protection Regulation</subject><subject>Genetic discrimination</subject><subject>Genetic screening</subject><subject>Genetic testing</subject><subject>Genetics</subject><subject>Health insurance</subject><subject>healthcare</subject><subject>Hospitals</subject><subject>information systems</subject><subject>Insurance companies</subject><subject>Laws, regulations and rules</subject><subject>Leaking of information</subject><subject>Notification</subject><subject>Precision medicine</subject><subject>Privacy</subject><subject>regulation</subject><subject>treatment</subject><issn>0025-1909</issn><issn>1526-5501</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>N95</sourceid><recordid>eNqFkkGLFDEQhYMoOK5evQkNgqfpsZLudNIXYVl0FVacw3oO6aS6zTCdrElGXH-9aUZcBwYkkED4XlW94hHyksKGMinezj6ZDQMqNkxy-YisKGddzTnQx2QFwHhNe-ifkmcp7QBASNGtyLttdD-0ua-2MWQ02QW_rrYYU_B6736hrT6jdcZ5XFfa2-oaPWZnqltM2fnpOXky6n3CF3_eC_L1w_vbq4_1zZfrT1eXN7XhTOaaa7CArbAj0xYGyrHroEU0cmCyEUNrTW-k7LuODo2AkaHtmWi4BDvolg3NBXl9rHsXw_dD6a124RDLiEkx2lDaF2ftAzXpPSrnx5CjNrNLRl1y3ssGoGeFqs9QUzEW9T54HF35PuE3Z_hyLM7OnBW8OREUJuPPPOlDSuoUXP8DDodU1pzKldz0Lacjf24QE0NKEUd1F92s472ioJYIqCUCaomAWiJQBK-Ogl3KIf6lWyla2TB42MRiKs7pf_V-A65cuQs</recordid><startdate>20181001</startdate><enddate>20181001</enddate><creator>Miller, Amalia R.</creator><creator>Tucker, Catherine</creator><general>INFORMS</general><general>Institute for Operations Research and the Management Sciences</general><scope>AAYXX</scope><scope>CITATION</scope><scope>N95</scope><scope>XI7</scope><scope>8BJ</scope><scope>FQK</scope><scope>JBE</scope><orcidid>https://orcid.org/0000-0003-0094-5226</orcidid><orcidid>https://orcid.org/0000-0002-1847-4832</orcidid></search><sort><creationdate>20181001</creationdate><title>Privacy Protection, Personalized Medicine, and Genetic Testing</title><author>Miller, Amalia R. ; Tucker, Catherine</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c528t-5a0d0e47df2ad0b15e6604eec8b2837b4dc9c889661b370f2ed9273580dba42b3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Alternative approaches</topic><topic>Analysis</topic><topic>Antidiscrimination</topic><topic>application contexts/sectors</topic><topic>Confidentiality</topic><topic>Data collection</topic><topic>General Data Protection Regulation</topic><topic>Genetic discrimination</topic><topic>Genetic screening</topic><topic>Genetic testing</topic><topic>Genetics</topic><topic>Health insurance</topic><topic>healthcare</topic><topic>Hospitals</topic><topic>information systems</topic><topic>Insurance companies</topic><topic>Laws, regulations and rules</topic><topic>Leaking of information</topic><topic>Notification</topic><topic>Precision medicine</topic><topic>Privacy</topic><topic>regulation</topic><topic>treatment</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Miller, Amalia R.</creatorcontrib><creatorcontrib>Tucker, Catherine</creatorcontrib><collection>CrossRef</collection><collection>Gale Business Insights: Global</collection><collection>Business Insights: Essentials</collection><collection>International Bibliography of the Social Sciences (IBSS)</collection><collection>International Bibliography of the Social Sciences</collection><collection>International Bibliography of the Social Sciences</collection><jtitle>Management science</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Miller, Amalia R.</au><au>Tucker, Catherine</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Privacy Protection, Personalized Medicine, and Genetic Testing</atitle><jtitle>Management science</jtitle><date>2018-10-01</date><risdate>2018</risdate><volume>64</volume><issue>10</issue><spage>4648</spage><epage>4668</epage><pages>4648-4668</pages><issn>0025-1909</issn><eissn>1526-5501</eissn><abstract>This paper explores how state genetic privacy laws affect the diffusion of personalized medicine, using data on genetic testing for cancer risks. State genetic privacy regimes employ and combine up to three alternative approaches to protecting patient privacy: Rules requiring that an individual is notified about potential privacy risks; rules restricting discriminatory usage of genetic data by employers or insurance companies; and rules limiting redisclosure without the consent of the individual. We find empirically that approaches to genetic and health privacy that give users control over redisclosure encourage the spread of genetic testing, but that notification deters individuals from obtaining genetic tests. We present some evidence that the latter reflects costs imposed on the supply of genetic testing by hospitals. We find no effects of state genetic antidiscrimination laws on genetic testing rates.
The online appendix is available at
https://doi.org/10.1287/mnsc.2017.2858
.
This paper was accepted by Chris Forman, information systems.</abstract><cop>Linthicum</cop><pub>INFORMS</pub><doi>10.1287/mnsc.2017.2858</doi><tpages>21</tpages><orcidid>https://orcid.org/0000-0003-0094-5226</orcidid><orcidid>https://orcid.org/0000-0002-1847-4832</orcidid></addata></record> |
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| identifier | ISSN: 0025-1909 |
| ispartof | Management science, 2018-10, Vol.64 (10), p.4648-4668 |
| issn | 0025-1909 1526-5501 |
| language | eng |
| recordid | cdi_gale_infotracmisc_A559830092 |
| source | Informs; EBSCO Business Source Complete; JSTOR |
| subjects | Alternative approaches Analysis Antidiscrimination application contexts/sectors Confidentiality Data collection General Data Protection Regulation Genetic discrimination Genetic screening Genetic testing Genetics Health insurance healthcare Hospitals information systems Insurance companies Laws, regulations and rules Leaking of information Notification Precision medicine Privacy regulation treatment |
| title | Privacy Protection, Personalized Medicine, and Genetic Testing |
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