Privacy (or Lack Thereof) on the Net

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GENETIC INFORMATION VIA THE INTERNET: Risks and Benefits by Leslie Biesecker, M.D.

The Internet is a global computer connection system that allows rapid and broad communication. This is a powerful new way to discuss many issues. Scientists have been using the Internet to talk about their work for several years. Recently, patients are also starting to use the Internet. Communication between scientists and patients and among patients can be a big help to those with illnesses. This is true for persons with rare disorders or unusual effects of common conditions. It can allow persons to talk with researchers and clinicians who know a lot about these disorders.

With any new method of communication, there are risks as well as benefits. Persons who communicate over the Internet should consider these risks carefully. You will need to balance the risks against the benefits, before putting any information, especially private information, on the Internet.

PRIVACY: The Internet is not private. Messages can be copied and forwarded to one or a million people with only a few keystrokes by the person who receives your message. In addition, hackers (mischievous computer wizards) can intercept messages and do with them as they please. You should be careful about how much personal information you put in any message. Don’t allow others to use personal information about you until you know what they are sending out and to whom.

RELIABILITY: Know whom you are dealing with when you send a message. The old network of families, doctors, and other professional forms a limited but important source for reliable information. Remember that any smart 15 year old kid or quack doctor can design a sharp looking home page on the Internet and start giving medical advice. No one monitors the net for junk of this kind.

COMMITMENT: The Internet should add to your current sources of health information and care. Your health care team has a commitment and obligation to take care of you. The person at the other computer can simply disconnect you and walk away. Don’t substitute computer communication for real health care and research.

In spite of these risks and limitations, the Internet can be extremely useful to find professionals with a specific research or clinical interest. Also, you can find other affected persons with whom you can share your experiences and knowledge. The information can put you in touch with persons around the globe whom you would otherwise never know.

Wise use of the Internet can be very powerful.

Written especially for the Alliance of Genetic Support Groups’ members, December 1995, by Dr. Leslie Biesecker, who is a Pediatrician and a Clinical Geneticist at the National Center for Human Genome Research. The ideas and opinions expressed here are those of Dr. Biesecker only and do not represent any position, policy, or procedure of the National Institutes of Health, any other Federal agency, or any other institution to which he is affiliated.

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