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Home > Privacy and Business > Medical Privacy > What is Medical Information? > Genetic Information


Genetic Information

New frontiers in the medical privacy debate are being created by new frontiers in medicine. An example is privacy of genetic information. Genetic information about individuals can reveal very important and sometimes private information about ancestry, activities, health, and health prospects.

Because there are so many potential uses of genetic information, and because social norms about how such information should or should not be used have yet to develop, it is very difficult to make judgements in this area. Some businesses, however, are already positioning themselves to help consumers maximize beneficial uses of genetic information while protecting privacy.

At the same time, some political leaders have proposed banning certain uses of genetic information by employers and insurers, for example. This puts consumers in a position of being able to conceal true and relevant facts about themselves in order to get or retain jobs or benefits. Privacy has not traditionally extended to hiding such information to gain advantage over others.

Society should not adopt genetic concealment without careful consideration. Such a policy would allow individuals to secretly shift the burden of their genetics to others. In other fields, concealment of true and relevant facts is considered misrepresentation or fraud. Far preferable would be policies that openly and directly offer aid and benefits to victims of genetic disease.

As developments in genetics improve life and longevity, our approach to genetic privacy will evolve. Even the greatest minds today cannot predict what genetics will bring or what the appropriate privacy standards for genetic information will be. Those who try to set privacy standards prematurely risk giving up many benefits of advances in genetic science.


Links:

Lock Away Your DNA: Gene Bank Would Store, Organize, and Safeguard Genetic Information by Daniel J. DeNoon, WebMD Medical News (October 12, 2000)

An Act Relative to Insurance and Genetic Testing and Privacy Protection, Chapter 254 of the Acts of 2000, Commonwealth of Massachusetts (August 22, 2000)

Comments? comments@privacilla.org (Subject: Genetics)

[updated 04/18/02]



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