4261.0: Tuesday, November 14, 2000 - 5:10 PM

Abstract #6066

"Genetic discrimination:" A survey of refusals of employment or insurance

Dorothy C. Wertz, PhD, Social Science, Ethics, and Law, The Shriver Center for Mental Retardation., Inc, 200 Trapelo Road, Waltham, MA 02452, 781-642-0292, dwertz@shriver.org

An anonymous questionnaire survey of 1538 board-certified geneticists and genetic counselors (1084, or 70% responding), 852 primary care physicians (499 or 59% responding), and 718 first-time visitors to 12 genetics clinics (476, or 66% responding)found that genetics professionals reported a total of 36 individuals or families refused employment and 237 refused life insurance on the basis of genetic predisposition, in the absence of symptoms;40 were refused employment and 237 were refused life insurance on the basis of carrier status only, for a total of 550 refused employment of insurance. Primary care physicians, with a median of 14 years in practice and 100-150 patients a week, reported a total of 63 refusals of health or life insurance or employment on genetic grounds. Among patients, 2% reported being denied or let go from a job, 7% were refused insurance coverage for some services, 5% were refused life insurance and 1% were refused school admission "because of a genetic disability or disease." Most patient reports fell within the scope of insurance or employment practice generally, and were only indirectly related to genetics and not at all to genetic testing. Results suggest that some discrimination solely on the basis of genotype exists, but is not a leading cause of inequity when compared with insurance practice generally.

Learning Objectives: Participants should learn how to define and recognize unfair discrimination, develop methods of assessing its extent, and discuss it on the basis of data

Keywords: Genetics, Ethics

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