{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,18]],"date-time":"2026-09-18T19:04:19Z","timestamp":1789758259012,"version":"4.0.1"},"reference-count":21,"publisher":"SAGE Publications","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JHD"],"published-print":{"date-parts":[[2020,10,8]]},"abstract":"<jats:p>Background: Communicating genetic information within families can provide individuals with the emotional support, alert family members to their own potential risk, and strengthen relationships. However, these communications have the potential to cause emotional distress to individuals and family members if family members are informed of a risk they do not wish to know or discuss. Communication about the decision to pursue testing and test results are especially sensitive in Huntington\u2019s disease (HD), where individuals often feel strongly about either knowing or not knowing their genetic status. Objective: To examine family communication patterns of genetic risk, the decision to pursue testing, and test results not just years, but decades after testing for HD, and examine how family communication of genetic risk information affects family relationships over the long-term. Methods: In this qualitative study, 39 semi-structured interviews were conducted with probands who went through genetic testing for HD. Clinic notes from these individuals were also analyzed. Results: Family communication patterns varied based on relation (e.g., significant others, child, extended family) and were influenced by a variety of factors. Sharing with spouses and children had a positive influence on the relationship in most cases. Sharing with extended family members had varying effects on relationships. Negative effects were more likely when family members were in denial, had not pursued testing for themselves, or did not support testing. Conclusion: Communication to significant others and children, should be discussed with and supported in individuals seeking testing for HD, but for extended family members, potential effects on the relationship, emotional distress, and benefits should be discussed and weighed.<\/jats:p>","DOI":"10.3233\/jhd-200402","type":"journal-article","created":{"date-parts":[[2020,6,19]],"date-time":"2020-06-19T12:10:13Z","timestamp":1592568613000},"page":"265-274","source":"Crossref","is-referenced-by-count":10,"title":["Family Communication Patterns and Challenges of Huntington\u2019s Disease Risk, the Decision to Pursue Presymptomatic Testing, and Test Results"],"prefix":"10.1177","volume":"9","author":[{"given":"Kelsey","family":"Stuttgen","sequence":"first","affiliation":[{"name":"Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA"},{"name":"Institute of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juli","family":"Bollinger","sequence":"additional","affiliation":[{"name":"Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"McCague","sequence":"additional","affiliation":[{"name":"Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA"},{"name":"Institute of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Dvoskin","sequence":"additional","affiliation":[{"name":"Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Debra","family":"Mathews","sequence":"additional","affiliation":[{"name":"Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","reference":[{"issue":"4","key":"10.3233\/JHD-200402_ref1","doi-asserted-by":"crossref","first-page":"204","DOI":"10.1038\/nrneurol.2014.24","article-title":"Huntington disease: Natural history, biomarkers and prospects for therapeutics","volume":"10","author":"Ross","year":"2014","journal-title":"Nat Rev Neurol"},{"issue":"1","key":"10.3233\/JHD-200402_ref2","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1002\/(SICI)1096-8628(20000103)90:1<49::AID-AJMG10>3.0.CO;2-3","article-title":"Impact of genetic testing for Huntington disease on the family system","volume":"90","author":"Sobel","year":"2000","journal-title":"Am J Med Genet"},{"issue":"2","key":"10.3233\/JHD-200402_ref3","doi-asserted-by":"crossref","first-page":"195","DOI":"10.1176\/jnp.1.2.195","article-title":"Presymptomatic DNA testing for Huntington\u2019s disease","volume":"1","author":"Brandt","year":"1989","journal-title":"J Neuropsychiatry Clin Neurosci"},{"issue":"3","key":"10.3233\/JHD-200402_ref4","doi-asserted-by":"crossref","first-page":"440","DOI":"10.1111\/jlme.12288","article-title":"Returning a research participant\u2019s genomic results to relatives: Analysis and recommendations","volume":"43","author":"Wolf","year":"2015","journal-title":"J Law Med Ethics"},{"issue":"4","key":"10.3233\/JHD-200402_ref5","doi-asserted-by":"crossref","first-page":"317","DOI":"10.1034\/j.1399-0004.2003.00142.x","article-title":"To tell or not to tell: Barriers and facilitators in family communication about genetic risk","volume":"64","author":"Forrest","year":"2003","journal-title":"Clin Genet"},{"issue":"3","key":"10.3233\/JHD-200402_ref6","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1111\/1467-8519.00234","article-title":"Experiences of genetic risk: Disclosure and the gendering of responsibility","volume":"15","author":"D\u2019Agincourt-Canning","year":"2001","journal-title":"Bioethics"},{"issue":"1","key":"10.3233\/JHD-200402_ref7","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1007\/s10897-012-9514-x","article-title":"Enhancing family communication about genetics: Ethical and professional dilemmas","volume":"22","author":"Hodgson","year":"2013","journal-title":"J Genet Couns"},{"issue":"2","key":"10.3233\/JHD-200402_ref8","doi-asserted-by":"crossref","first-page":"295","DOI":"10.4321\/S1137-66272012000200011","article-title":"The impact of Huntington\u2019s disease on the family","volume":"35","author":"Fern\u00e1ndez","year":"2012","journal-title":"An Sist Sanit Navar"},{"issue":"1","key":"10.3233\/JHD-200402_ref9","doi-asserted-by":"crossref","first-page":"70","DOI":"10.1007\/s10897-010-9329-6","article-title":"More appreciation of life or regretting the test? 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