--- title: "Health Systems Share Genetic Findings With At-Risk Relatives | Sutter Health" description: "Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome" url: "https://www.sutterhealth.org/research/publications/health-systems-share-genetic-findings-with-at-risk-relatives-1055312879" --- 1. [Home](https://www.sutterhealth.org/) / 2. [Research](https://www.sutterhealth.org/research) / 3. [Research publications](https://www.sutterhealth.org/research/publications) / 4. Health Systems Share Genetic Findings With At-Risk Relatives # Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome _Journal of Patient Centered Research and Reviews_ 2022-10-18 ## Abstract Purpose:Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives. Methods:We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient's death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a qualitative research team to identify broad themes and representative participant quotes. Results:Among 23 participating interviewees, 19 supported health systems informing relatives about their Lynch syndrome risk while the remaining 4 were conflicted about patient privacy. Most (n=22) wanted their Lynch syndrome diagnosis shared with relatives if they were unable to share and to be informed of their own risk if a diagnosed relative was unable to share. The most common issues noted regarding information-sharing with relatives included patient privacy and privacy laws (n=8), potential anxiety (n=5), and lack of contact information for relatives (n=3). Interviewee perspectives on how health systems could communicate genetic findings generated a consensus: When - a few months after but within a year of the patient's death; How - explanatory letter and follow-up phone call; and Who - a knowledgeable professional. Conclusions: Interviews demonstrated strong and consistent perspectives from individuals diagnosed with Lynch syndrome that health systems have a role and responsibility to inform relatives of genetic findings following a patient's death. [PubMed abstract](https://pubmed.ncbi.nlm.nih.gov/36340570/) ![Su-Ying Liang, Ph.D.](https://dyn.mktgcdn.com/p/cRIUee_GK3HEL1Wq8svqoUApvABjlwVVA-KUHVGzuNw/fit=crop,gravity=auto,dpr=2,width=188,height=250,quality=100) Su-Ying Liang, Ph.D. Principal investigator [View profile](https://www.sutterhealth.org/research/investigators/su-ying-liang-phd-1049681030) ## Research topics - [Genetics](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Genetics%5C%22%22) ## Related publications [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) - Publication ### [Bovine mammary gene expression profiling using a cDNA microarray enhanced for mammary-specific transcripts.](https://www.sutterhealth.org/research/publications/bovine-mammary-gene-expression-profiles-1055312941) Suchyta SP, Sipkovsky S, Halgren RG, Kruska R, Elftman M, Weber-Nielsen M, Vandehaar MJ, Xiao L, Tempelman RJ, Coussens PM. Physiol Genomics. 16(1):8-18. 2003 Dec 16 - Publication ### [Insights from a temporal assessment of increases in US private payer coverage of tumor sequencing from 2015 to 2019.](https://www.sutterhealth.org/research/publications/us-private-payer-coverage-of-tumor-sequencing-2015-2019-1055312764) Trosman JR, Douglas MP, Liang SY, Weldon CB, Kurian AW, Kelley RK, Phillips KA. Value Health. 23(5):551-558. doi: 10.1016/j.jval.2020.01.018. Epub 2020 Mar 19. 2020 May 01 - Publication ### [Diverse transcriptional programs associated with environmental stress and hormones in the Arabidopsis receptor-like kinase gene family.](https://www.sutterhealth.org/research/publications/transcription-programs-arabidopsis-receptor-like-genes-1055312696) Chae L, Sudat S, Dudoit S, Zhu T, Luan S. Mol Plant. 2(1):84-107. doi: 10.1093/mp/ssn083. 2009 Jan 01 - Publication ### [Investigation of 89 candidate gene variants for effects on all-cause mortality following acute coronary syndrome.](https://www.sutterhealth.org/research/publications/candidate-gene-variants-effect-mortality-acs-1055312963) Morgan TM, Xiao L, Lyons P, Bethany Kassebaum B, Krumholz HM, Spertus JA. BMC Medical Genetics 9:66 doi:10.1186/1471-2350-9-66 2008 Jul 12 - Publication ### [Beyond consent: building trusting relationships with diverse populations in precision medicine research.](https://www.sutterhealth.org/research/publications/trust-with-diverse-populations-in-precision-med-research-1055312343) Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, Luft HS, Wilfond BS, Soo-Jin Lee S. Am J Bioeth. 18(4):3-20. doi: 10.1080/15265161.2018.1431322. 2018 Apr 01 [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) ```json {"@context":"https://schema.org","@type":"MedicalOrganization","name":"Sutter Health","@id":"https://www.sutterhealth.org/#medicalorganization","url":"https://www.sutterhealth.org","logo":"https://www.sutterhealth.org/static/images/sutter-health-logo.svg","address":{"@type":"PostalAddress","streetAddress":"2200 River Plaza Drive","addressLocality":"Sacramento","addressRegion":"CA","postalCode":"95833","addressCountry":"US"},"areaServed":{"@type":"AdministrativeArea","name":"California"},"sameAs":["https://www.facebook.com/SutterHealth","https://www.instagram.com/sutterhealth/","https://x.com/SutterHealth","https://www.youtube.com/sutterhealth","https://www.linkedin.com/company/sutter-health","https://en.wikipedia.org/wiki/Sutter_Health"]} ``` ```json {"@context":"https://schema.org","@type":"BreadcrumbList","@id":"https://www.sutterhealth.org/research/publications/health-systems-share-genetic-findings-with-at-risk-relatives-1055312879#breadcrumblist","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https://www.sutterhealth.org/"},{"@type":"ListItem","position":2,"name":"Research","item":"https://www.sutterhealth.org/research"},{"@type":"ListItem","position":3,"name":"Research publications","item":"https://www.sutterhealth.org/research/publications"},{"@type":"ListItem","position":4,"name":"Health Systems Share Genetic Findings With At-Risk Relatives"}]} ``` ```json {"@context":"https://schema.org","@type":"MedicalScholarlyArticle","@id":"https://www.sutterhealth.org/research/publications/health-systems-share-genetic-findings-with-at-risk-relatives-1055312879#medicalscholarlyarticle","name":"Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome","headline":"Health Systems Share Genetic Findings With At-Risk Relatives","abstract":"Purpose:Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives. Methods:We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient's death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a qualitative research team to identify broad themes and representative participant quotes. Results:Among 23 participating interviewees, 19 supported health systems informing relatives about their Lynch syndrome risk while the remaining 4 were conflicted about patient privacy. Most (n=22) wanted their Lynch syndrome diagnosis shared with relatives if they were unable to share and to be informed of their own risk if a diagnosed relative was unable to share. The most common issues noted regarding information-sharing with relatives included patient privacy and privacy laws (n=8), potential anxiety (n=5), and lack of contact information for relatives (n=3). Interviewee perspectives on how health systems could communicate genetic findings generated a consensus: When - a few months after but within a year of the patient's death; How - explanatory letter and follow-up phone call; and Who - a knowledgeable professional. Conclusions: Interviews demonstrated strong and consistent perspectives from individuals diagnosed with Lynch syndrome that health systems have a role and responsibility to inform relatives of genetic findings following a patient's death.","description":"Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? 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