Genetic Privacy

 

Please have a look at the Genetic Privacy Network.

See also: My DNA Rights.org


Why?


Here's what the Council for Responsible Genetics urges: 

"The consumer is faced with almost daily risks to their genetic privacy from human health and reproductive technologies to the criminal justice system.  The consumer needs an understanding of the science, the privacy risks involved in releasing genetic information in various contexts, and the degree of legal and regulatory protection available. The Council for Responsible Genetics’ Genetic Privacy Manual is  a comprehensive, electronic source of information for the consumer on these issues."  

Here's a sample of the kind of practical information you'll get from the Genetic Privacy Manual:
 

“Always ask your doctor or health care professional how they handle personal genetic information and whether they work with any third party entities that have access to such information

Always ask your doctor or health care professional if a particular medical procedure or research protocol involves genetic testing.

You will need to make a personal decision on whether your genetic test results, specimens collected or health care information will be available for anonymous or coded genetic research. Speak with your doctor or health care provider and make sure to thoroughly read the notice form provided to you.

Never consent to any medical procedure or research protocol that does involve genetic testing without knowing (1) what genetic information is being collected, (2) what will be done with that genetic information, (3) what security measures are in place to protect the privacy of that information, and (4) what will done with any genetic samples after the genetic test(s) is complete.

If you DO NOT want your results of a genetic test, specimens collected or health care information available for anonymous or coded genetic research you must indicate so in writing to your doctor or health care provider.

If you change your mind in the future, it is YOUR responsibility to inform your health care provider and it would only affect results of genetic tests, specimens collected or health care information from that date forward.

Request a Copy of Your Health Records. Your Provider May Charge a “Reasonable Fee” for Such Copies.””
— Genetic Privacy Manual