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Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry
Purpose Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the...
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| Published in: | Cancer causes & control 2019-04, Vol.30 (4), p.395-408 |
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| cites | cdi_FETCH-LOGICAL-c496t-8790293166d7c672fc87accf2d968f525a32f9d76071d2cdea84e9409b7231993 |
| container_end_page | 408 |
| container_issue | 4 |
| container_start_page | 395 |
| container_title | Cancer causes & control |
| container_volume | 30 |
| creator | John, Esther M. Sangaramoorthy, Meera Koo, Jocelyn Whittemore, Alice S. West, Dee W. |
| description | Purpose
Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011.
Methods
We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors.
Results
Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73–76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92–95%) and relatives (82–87%), but lower for some Asian–American subgroups (probands: 72–88%; relatives: 71–88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency.
Conclusions
These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research. |
| doi_str_mv | 10.1007/s10552-019-01154-6 |
| format | article |
| fullrecord | <record><control><sourceid>jstor_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_6548459</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><jstor_id>48691261</jstor_id><sourcerecordid>48691261</sourcerecordid><originalsourceid>FETCH-LOGICAL-c496t-8790293166d7c672fc87accf2d968f525a32f9d76071d2cdea84e9409b7231993</originalsourceid><addsrcrecordid>eNp9kU1rFTEUhkNR7G31DxSUATfdjJ58JxtBaj-Egpt2HXIzmd5cZpJrMlPovzft1Ft14SIEcp73PefkRegEwycMID8XDJyTFrCuB3PWigO0wlzSVhLCX6EVaC5bThg9REelbAGACwJv0CEFRXnVrNC385jTMIw-To2NXbMOqey8C_WhcbXg3RRSbEJsbDPOwxT8tInBNb0dw_BQkU3K01v0urdD8e-e72N0e3F-c3bVXv-4_H729bp1TIupVVID0RQL0UknJOmdkta5nnRaqJ4TbinpdScFSNwR13mrmNcM9FoSirWmx-jL4rub16PvXB0628HschhtfjDJBvN3JYaNuUv3RnCmGH80OH02yOnn7MtkxlCcHwYbfZqLIVgpAlpoVtGP_6DbNOdY13ui6gdqkJUiC-VyKiX7fj8MBvMYkllCMjUk8xSSEVX04c819pLfqVSALkCppXjn80vv_9q-X1TbMqW8d2VKaEwEpr8AoTWmUw</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2188083907</pqid></control><display><type>article</type><title>Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry</title><source>JSTOR Archival Journals and Primary Sources Collection</source><source>Springer Link</source><creator>John, Esther M. ; Sangaramoorthy, Meera ; Koo, Jocelyn ; Whittemore, Alice S. ; West, Dee W.</creator><creatorcontrib>John, Esther M. ; Sangaramoorthy, Meera ; Koo, Jocelyn ; Whittemore, Alice S. ; West, Dee W.</creatorcontrib><description>Purpose
Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011.
Methods
We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors.
Results
Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73–76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92–95%) and relatives (82–87%), but lower for some Asian–American subgroups (probands: 72–88%; relatives: 71–88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency.
Conclusions
These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research.</description><identifier>ISSN: 0957-5243</identifier><identifier>EISSN: 1573-7225</identifier><identifier>DOI: 10.1007/s10552-019-01154-6</identifier><identifier>PMID: 30835011</identifier><language>eng</language><publisher>Cham: Springer Science + Business Media</publisher><subject><![CDATA[Adolescent ; Adult ; African Americans - statistics & numerical data ; Asian Americans ; Asian Americans - statistics & numerical data ; Biomedical and Life Sciences ; Biomedical research ; Biomedicine ; Breast cancer ; Breast Neoplasms - epidemiology ; Breast Neoplasms - ethnology ; California - epidemiology ; Cancer ; Cancer Research ; Continental Population Groups - statistics & numerical data ; English language ; Enrollments ; Epidemiology ; European Continental Ancestry Group - statistics & numerical data ; Female ; Genetics ; Hematology ; Hispanic Americans ; Hispanic Americans - statistics & numerical data ; Humans ; Immigrants ; Middle Aged ; Minority & ethnic groups ; Mouthwashes ; Oncology ; ORIGINAL PAPER ; Populations ; Public Health ; Registries ; Risk analysis ; Risk Factors ; Subgroups ; Young Adult]]></subject><ispartof>Cancer causes & control, 2019-04, Vol.30 (4), p.395-408</ispartof><rights>Springer Nature Switzerland AG 2019</rights><rights>Cancer Causes & Control is a copyright of Springer, (2019). All Rights Reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c496t-8790293166d7c672fc87accf2d968f525a32f9d76071d2cdea84e9409b7231993</citedby><cites>FETCH-LOGICAL-c496t-8790293166d7c672fc87accf2d968f525a32f9d76071d2cdea84e9409b7231993</cites><orcidid>0000-0003-3259-8003</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/48691261$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://www.jstor.org/stable/48691261$$EHTML$$P50$$Gjstor$$H</linktohtml><link.rule.ids>230,315,786,790,891,27957,27958,58593,58826</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30835011$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>John, Esther M.</creatorcontrib><creatorcontrib>Sangaramoorthy, Meera</creatorcontrib><creatorcontrib>Koo, Jocelyn</creatorcontrib><creatorcontrib>Whittemore, Alice S.</creatorcontrib><creatorcontrib>West, Dee W.</creatorcontrib><title>Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry</title><title>Cancer causes & control</title><addtitle>Cancer Causes Control</addtitle><addtitle>Cancer Causes Control</addtitle><description>Purpose
Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011.
Methods
We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors.
Results
Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73–76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92–95%) and relatives (82–87%), but lower for some Asian–American subgroups (probands: 72–88%; relatives: 71–88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency.
Conclusions
These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research.</description><subject>Adolescent</subject><subject>Adult</subject><subject>African Americans - statistics & numerical data</subject><subject>Asian Americans</subject><subject>Asian Americans - statistics & numerical data</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedical research</subject><subject>Biomedicine</subject><subject>Breast cancer</subject><subject>Breast Neoplasms - epidemiology</subject><subject>Breast Neoplasms - ethnology</subject><subject>California - epidemiology</subject><subject>Cancer</subject><subject>Cancer Research</subject><subject>Continental Population Groups - statistics & numerical data</subject><subject>English language</subject><subject>Enrollments</subject><subject>Epidemiology</subject><subject>European Continental Ancestry Group - statistics & numerical data</subject><subject>Female</subject><subject>Genetics</subject><subject>Hematology</subject><subject>Hispanic Americans</subject><subject>Hispanic Americans - statistics & numerical data</subject><subject>Humans</subject><subject>Immigrants</subject><subject>Middle Aged</subject><subject>Minority & ethnic groups</subject><subject>Mouthwashes</subject><subject>Oncology</subject><subject>ORIGINAL PAPER</subject><subject>Populations</subject><subject>Public Health</subject><subject>Registries</subject><subject>Risk analysis</subject><subject>Risk Factors</subject><subject>Subgroups</subject><subject>Young Adult</subject><issn>0957-5243</issn><issn>1573-7225</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2019</creationdate><recordtype>article</recordtype><recordid>eNp9kU1rFTEUhkNR7G31DxSUATfdjJ58JxtBaj-Egpt2HXIzmd5cZpJrMlPovzft1Ft14SIEcp73PefkRegEwycMID8XDJyTFrCuB3PWigO0wlzSVhLCX6EVaC5bThg9REelbAGACwJv0CEFRXnVrNC385jTMIw-To2NXbMOqey8C_WhcbXg3RRSbEJsbDPOwxT8tInBNb0dw_BQkU3K01v0urdD8e-e72N0e3F-c3bVXv-4_H729bp1TIupVVID0RQL0UknJOmdkta5nnRaqJ4TbinpdScFSNwR13mrmNcM9FoSirWmx-jL4rub16PvXB0628HschhtfjDJBvN3JYaNuUv3RnCmGH80OH02yOnn7MtkxlCcHwYbfZqLIVgpAlpoVtGP_6DbNOdY13ui6gdqkJUiC-VyKiX7fj8MBvMYkllCMjUk8xSSEVX04c819pLfqVSALkCppXjn80vv_9q-X1TbMqW8d2VKaEwEpr8AoTWmUw</recordid><startdate>20190401</startdate><enddate>20190401</enddate><creator>John, Esther M.</creator><creator>Sangaramoorthy, Meera</creator><creator>Koo, Jocelyn</creator><creator>Whittemore, Alice S.</creator><creator>West, Dee W.</creator><general>Springer Science + Business Media</general><general>Springer International Publishing</general><general>Springer Nature B.V</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7RV</scope><scope>7TO</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>H94</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-3259-8003</orcidid></search><sort><creationdate>20190401</creationdate><title>Enrollment and biospecimen collection in a multiethnic family cohort</title><author>John, Esther M. ; Sangaramoorthy, Meera ; Koo, Jocelyn ; Whittemore, Alice S. ; West, Dee W.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c496t-8790293166d7c672fc87accf2d968f525a32f9d76071d2cdea84e9409b7231993</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2019</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>African Americans - statistics & numerical data</topic><topic>Asian Americans</topic><topic>Asian Americans - statistics & numerical data</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedical research</topic><topic>Biomedicine</topic><topic>Breast cancer</topic><topic>Breast Neoplasms - epidemiology</topic><topic>Breast Neoplasms - ethnology</topic><topic>California - epidemiology</topic><topic>Cancer</topic><topic>Cancer Research</topic><topic>Continental Population Groups - statistics & numerical data</topic><topic>English language</topic><topic>Enrollments</topic><topic>Epidemiology</topic><topic>European Continental Ancestry Group - statistics & numerical data</topic><topic>Female</topic><topic>Genetics</topic><topic>Hematology</topic><topic>Hispanic Americans</topic><topic>Hispanic Americans - statistics & numerical data</topic><topic>Humans</topic><topic>Immigrants</topic><topic>Middle Aged</topic><topic>Minority & ethnic groups</topic><topic>Mouthwashes</topic><topic>Oncology</topic><topic>ORIGINAL PAPER</topic><topic>Populations</topic><topic>Public Health</topic><topic>Registries</topic><topic>Risk analysis</topic><topic>Risk Factors</topic><topic>Subgroups</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>John, Esther M.</creatorcontrib><creatorcontrib>Sangaramoorthy, Meera</creatorcontrib><creatorcontrib>Koo, Jocelyn</creatorcontrib><creatorcontrib>Whittemore, Alice S.</creatorcontrib><creatorcontrib>West, Dee W.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing & Allied Health Database</collection><collection>Oncogenes and Growth Factors Abstracts</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>Public Health Database</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>PML(ProQuest Medical Library)</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Cancer causes & control</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>John, Esther M.</au><au>Sangaramoorthy, Meera</au><au>Koo, Jocelyn</au><au>Whittemore, Alice S.</au><au>West, Dee W.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry</atitle><jtitle>Cancer causes & control</jtitle><stitle>Cancer Causes Control</stitle><addtitle>Cancer Causes Control</addtitle><date>2019-04-01</date><risdate>2019</risdate><volume>30</volume><issue>4</issue><spage>395</spage><epage>408</epage><pages>395-408</pages><issn>0957-5243</issn><eissn>1573-7225</eissn><notes>ObjectType-Article-1</notes><notes>SourceType-Scholarly Journals-1</notes><notes>ObjectType-Feature-2</notes><notes>content type line 23</notes><notes>EMJ acquired the data, conceived of and designed the analysis, interpreted the data, and drafted and revised the manuscript. MS contributed to the literature review and the writing. JK and MS performed data management and the statistical analysis, interpreted the data, and participated in the revision of the manuscript. ASW and DWW acquired the data, interpreted the data, and participated in the revision of the manuscript. All authors approved the final manuscript.</notes><notes>Author contributions</notes><abstract>Purpose
Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011.
Methods
We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors.
Results
Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73–76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92–95%) and relatives (82–87%), but lower for some Asian–American subgroups (probands: 72–88%; relatives: 71–88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency.
Conclusions
These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research.</abstract><cop>Cham</cop><pub>Springer Science + Business Media</pub><pmid>30835011</pmid><doi>10.1007/s10552-019-01154-6</doi><tpages>14</tpages><orcidid>https://orcid.org/0000-0003-3259-8003</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Cancer causes & control, 2019-04, Vol.30 (4), p.395-408 |
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| language | eng |
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| source | JSTOR Archival Journals and Primary Sources Collection; Springer Link |
| subjects | Adolescent Adult African Americans - statistics & numerical data Asian Americans Asian Americans - statistics & numerical data Biomedical and Life Sciences Biomedical research Biomedicine Breast cancer Breast Neoplasms - epidemiology Breast Neoplasms - ethnology California - epidemiology Cancer Cancer Research Continental Population Groups - statistics & numerical data English language Enrollments Epidemiology European Continental Ancestry Group - statistics & numerical data Female Genetics Hematology Hispanic Americans Hispanic Americans - statistics & numerical data Humans Immigrants Middle Aged Minority & ethnic groups Mouthwashes Oncology ORIGINAL PAPER Populations Public Health Registries Risk analysis Risk Factors Subgroups Young Adult |
| title | Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry |
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