Related Experiment Videos
Genetic discrimination: perspectives of consumers
E V Lapham1, C Kozma, J O Weiss
1Georgetown University Child Development Center, 3307 M Street, NW, Washington, DC, 20007-3935. laphamv@medlib.georgetown.edu
Science (New York, N.Y.)
|October 25, 1996
Summary
Genetic disorders can lead to perceived discrimination, with many individuals fearing job or insurance denials. This fear discourages genetic testing and disclosure of genetic information to employers and insurers.
Area of Science:
- Genetics
- Bioethics
- Public Health
Background:
- Genetic disorders impact numerous families.
- Concerns about genetic discrimination are rising.
- Understanding patient perceptions is crucial.
Purpose of the Study:
- To investigate the perceived discrimination experienced by individuals with genetic disorders.
- To assess the impact of genetic discrimination fears on health behaviors.
- To highlight the need for further research into genetic discrimination.
Main Methods:
- Survey of 332 members of genetic support groups.
- Inclusion of families with 101 different genetic disorders.
- Analysis of perceived discrimination in insurance and employment.
Main Results:
- 25% believed refused life insurance, 22% health insurance, 13% denied employment.
- 9% refused genetic testing due to fear of discrimination.
- 18% withheld information from insurers, 17% from employers.
Conclusions:
- Perceived genetic discrimination is a significant issue for affected individuals.
- Fear of discrimination influences decisions about genetic testing and information disclosure.
- Further investigation is needed to quantify the extent of genetic discrimination.