Ethical, Legal, and Social Issues in Genetic Testing

Information from genetic testing can affect the lives of individuals and their families. In addition to personal and family issues, genetic disease or susceptibility may have implications for employment and insurance. Therefore, careful consideration in the handling of this information is very important. Critical issues include:

• Privacy - the rights of individuals to maintain privacy. Some genetic tests are required or strongly encouraged for developing fetuses and newborn babies. If an infant is found to be a carrier or likely to develop or be affected by an inherited disease, these findings may affect the future employability or insurability of the individual.

• Informed consent - obtaining permission to do genetic testing. One must have knowledge of the risks, benefits, effectiveness, and alternatives to testing in order to understand the implications of genetic testing.

• Confidentiality - acknowledgment that genetic information is sensitive and access should to limited to those authorized to receive it. Future access to a person's genetic information also should be limited.