Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome
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...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Advocate Aurora Health
2022-10-01
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| Series: | Journal of Patient-Centered Research and Reviews |
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| Online Access: | https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1945&context=jpcrr |
| _version_ | 1797710024991047680 |
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| author | Jessica Ezzell Hunter Jennifer L. Schneider Alison J. Firemark James V. Davis Sara Gille Pamala A. Pawloski Su-Ying Liang Victoria Schlieder Alanna Kulchak Rahm |
| author_facet | Jessica Ezzell Hunter Jennifer L. Schneider Alison J. Firemark James V. Davis Sara Gille Pamala A. Pawloski Su-Ying Liang Victoria Schlieder Alanna Kulchak Rahm |
| author_sort | Jessica Ezzell Hunter |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-12T06:46:10Z |
| format | Article |
| id | doaj.art-758100e3d05d409ca4ee10ea5e828972 |
| institution | Directory Open Access Journal |
| issn | 2330-0698 |
| language | English |
| last_indexed | 2024-03-12T06:46:10Z |
| publishDate | 2022-10-01 |
| publisher | Advocate Aurora Health |
| record_format | Article |
| series | Journal of Patient-Centered Research and Reviews |
| spelling | doaj.art-758100e3d05d409ca4ee10ea5e8289722023-09-03T00:33:48ZengAdvocate Aurora HealthJournal of Patient-Centered Research and Reviews2330-06982022-10-0194282289doi:10.17294/2330-0698.1945Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch SyndromeJessica Ezzell Hunter0https://orcid.org/0000-0002-1117-1097Jennifer L. Schneider1https://orcid.org/0000-0002-8525-8873Alison J. Firemark2https://orcid.org/0000-0001-6767-6943James V. Davis3Sara Gille4Pamala A. Pawloski5https://orcid.org/0000-0002-1005-5764Su-Ying Liang6Victoria Schlieder7https://orcid.org/0000-0002-6665-9161Alanna Kulchak Rahm 8https://orcid.org/0000-0003-2513-9298RTI International, Research Triangle Park, NC; Kaiser Permanente Center for Health Research, Portland, ORKaiser Permanente Center for Health Research, Portland, ORKaiser Permanente Center for Health Research, Portland, ORKaiser Permanente Center for Health Research, Portland, ORKaiser Permanente Center for Health Research, Portland, ORHealthPartners Institute, Bloomington, MNPalo Alto Medical Foundation Research Institute, Palo Alto, CAGeisinger, Danville, PAGeisinger, Danville, PAPurpose: 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.https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1945&context=jpcrrlynch syndromemedical geneticspostmortem disclosurefamily communicationbioethics |
| spellingShingle | Jessica Ezzell Hunter Jennifer L. Schneider Alison J. Firemark James V. Davis Sara Gille Pamala A. Pawloski Su-Ying Liang Victoria Schlieder Alanna Kulchak Rahm 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 lynch syndrome medical genetics postmortem disclosure family communication bioethics |
| title | Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome |
| title_full | Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome |
| title_fullStr | Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome |
| title_full_unstemmed | Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome |
| title_short | Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome |
| title_sort | should health systems share genetic findings with at risk relatives when the proband is deceased interviews with individuals diagnosed with lynch syndrome |
| topic | lynch syndrome medical genetics postmortem disclosure family communication bioethics |
| url | https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1945&context=jpcrr |
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