4261.0: Tuesday, November 14, 2000 - 4:50 PM

Abstract #17286

Disclosure by persons with chronic medical conditions: Whom do they tell, and with what consequences?

Nancy E Kass, SCD1, Sara Chandros Hull, PhD2, Julia Slutsman1, Larry Gostin, JD3, and Marvin Natowicz, MD4. (1) BIOETHICS INSTITUTE, Johns Hopkins School of Public Health, 624 N. BROADWAY, HAMPTON HOUSE ROOM 344, Baltimore, MD 21205, 410-955-0310, nkass@jhsph.edu, (2) National Center for Human Genome Research, (3) Georgetown University Law Center, (4) Shriver Center for Mental Retardation

BACKGROUND: Little empirical work has been conducted concerning what choices individuals make regarding the privacy of personal medical information. Moreover, there is little information to suggest whether having a genetic condition is associated with the likelihood of keeping personal medical information private. METHODS: Interviews were conducted with 602 adults (or parents of children, or at risk for) one of six chronic medical conditions (sickle cell disease, cystic fibrosis, diabetes, HIV, breast or colon cancer). Interviews included quantitative and qualitative questions regarding individuals' values, beliefs, and experiences with privacy, confidentiality, and access to health insurance. Data in this presentation are limited to questions regarding disclosure of personal information to others (family, neighbors, employers, doctors, insurers). RESULTS: Almost all respondents disclosed their medical condition to their spouses (96%) and children (86%). Respondents with HIV and sickle cell disease were less likely to inform their friends and neighbors of their condition than those with other diagnoses (19% and 27%, compared with 47% overall, p<0.001). Respondents with breast and colon cancer were less likely to inform insurers (65% and 60%, compared with 77% overall, p<0.001). Respondents with HIV were less likely to inform others of their status in all contexts. Seventy-five percent of respondents overall were glad they have told others; those with HIV were most likely to report being glad (83%). Persons with HIV also were mostly likely to regret telling others (22%, compared with 13% overall). Quotes to help explain these statistics will be provided.

Learning Objectives: 1. Identify populations more and less likely to disclose personal medical information 2. Understand perspectives of individuals who choose to share information and who choose not to share information

Keywords: Bioethics, Genetics

Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

The 128th Annual Meeting of APHA