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]
