Linked Life Data

17632780

Source:http://linkedlifedata.com/resource/pubmed/id/17632780

Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
16
pubmed:dateCreated
2007-7-31
pubmed:abstractText
Patterns of disclosure of Huntington disease risk and genetic test results among family members are important, but have been underexplored. We interviewed 21 individuals in-depth - eight mutation-positive for HD, four mutation-negative, and nine not tested - for 2 hr each. Within families, critical questions arose of what, when, and to whom to disclose, and what to do post-disclosure. Interviewees wrestled with dilemmas of what to tell (e.g., suspicions vs. confirmed symptoms; initiation vs. completion of testing; partial vs. indirect information), how to disclose (e.g., planning in advance vs. "blurting out" information in arguments), and whether and how to tell extended family members. Questions arose of when to tell (i.e., to avoid disclosing "too early" or "too late"). Similarities and differences emerged related to types of relationships (e.g., parents telling offspring vs. offspring telling parents vs. siblings telling each other). Individuals often disclosed because of perceived duty to foster the health of their family members, enabling these others to pursue appropriate medical evaluation, if desired. Yet tensions arose because the information could burden these members, who also have rights to remain "in denial" if they wish and not discuss the topic or pursue testing. Post-disclosure, dilemmas emerged of whether and how much to encourage family members to pursue testing. These data shed important light on critical issues that have received little, if any, attention concerning what, how, and when disclosure occurs, and have key implications for at-risk individuals, genetic counselors, and other health care workers (HCWs), and for future research. At-risk individuals would benefit from considering these issues in advance. HCWs need to realize that these decisions are multi-faceted. Future research can explore whether, when, how, and how often HCWs raise these issues with individuals.
pubmed:grant
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Aug
pubmed:issn
1552-4825
pubmed:author
pubmed:copyrightInfo
(c) 2007 Wiley-Liss, Inc.
pubmed:issnType
Print
pubmed:day
15
pubmed:volume
143A
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
1835-49
pubmed:dateRevised
2009-11-19
pubmed:meshHeading
pubmed:year
2007
pubmed:articleTitle
Disclosures of Huntington disease risk within families: patterns of decision-making and implications.
pubmed:affiliation
Associate Professor of Clinical Psychiatry, College of Physicians and Surgeons and Mailman School of Public Health, Columbia University, New York, New York, USA. rlk2@columbia.edu
pubmed:publicationType
Journal Article, Research Support, N.I.H., Extramural