Giving your genome to a for-profit corporation for testing today is a very dangerous act for the following reasons:
1) Americans NO longer have the right to health privacy! Today, your rights to health privacy in electronic health systems are nil. You have no control over personal electronic health information. Federal bureaucrats eliminated our rights to control the use and disclosures of personal health information in electronic systems in 2002. The media has not reported on this drastic elimination of every Americans’ privacy rights. See HIPAA’s Intent v. Reality.
2) Once you reveal your genome, you will never be able to delete it from the private corporation’s data bases or make it private again. Why on earth would you pay someone to take and use the most personal health data that exists about you and your family for whatever purposes they choose? Think about Paris Hilton’s sex video, once it was out in cyberspace, it can never be private again. It will live for millenia on the Internet.
3) Why pay a private corporation like 23andMe or any other for-profit genetic testing lab to take your extremely valuable and sensitive personal health data and give it to them as a CORPORATE asset—to sell, to disclose to researchers for studies you might not want to be part of, to sell as an asset to employers or insurers or financial institutions, or even to sell to the US Government as part of the data profiles they are building on every American in Fusion Centers.
4) The legal duties of coporations are to stockholders, not to patients or people who buy genetic tests. Genetic testing labs like 23andMe can be bought by Google or the Bank of America or to a business that sells employers genetic snapshots of future employees’ potential illnesses. Even if you trust a genetic lab—-you have no control over whether that corporation is sold to another corporation that you would never want to own your DNA.
5) Today’s health IT systems are notoriously insecure and hackable. An industry study of 850 electronic health records systems found ALL of them could easily be hacked. See Article.
What assurances do you have that the lab’s database is secure enough to prevent your genome or genetic tests from being stolen?
6) It is crtical to understand that giving ownerhsip of a personal asset like your DNA or genome to a corporation is a very bad idea. Not only do you put your future opportunities at risk, you endanger your entire family’s futures at the same time.
As a practicing physician who has spent over 30 years listening to patients whose sensitve medical records were used against them by employers or used to humiliate them or harm them in public, I am very well aware of how personal health information is used to harm people and ruin lives. I founded Patient Privacy Rights because health information should never be used except to help you get well or for research WITH your informed consent. No one should be denied a job or a promotion because of fears about their future health.
Because of the lack of privacy, 600,000 people refuse to seek treatment or early diagnosis for cancer and 2,000,000 refuse treatment for mental illness. 150,000 Iraqi vets refuse treatment for PTSD because they fear their treatment will not be private. The result is the highest rate of suicide among active duty military in 30 years. The lack of health privacy kills.
Current law is just not enough to protect health privacy. GINA is not enough. We need Congress to restore our longstanding Constitutional, legal, and ethical rights to control personal health information. Without that right firmly re-established in Federal law, giving ANYONE your sensitive genomic or health information is a very bad idea.
Check out our website. You can sign up for e-alerts about health privacy in the Digital Age. If we are able to restore control over our personal digital health information, then we have a powerful model for building personal control over ALL our personal electronic data (financial, email, phone records, purchases, etc). If you do not fight for your privacy rights, who will?
If EVERYTHING about you is for sale and can be seen by everyone, will you continue to have your precious liberties and freedoms?
See Original Article