[Med-privacy] Austin Statesman Op-Ed on medical privacy: In 2006, could having cancer
cost you a job?
dpeelmd@aol.com
dpeelmd@aol.com
Sun, 22 Jan 2006 14:52:07 -0500
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COMMENTARY
Peel: In 2006, could having cancer cost you a job?
Deborah C. Peel
Saturday, January 21, 2006
Lance Armstrong's team cancelled his contract when he got testicular cancer. Fair enough, if being sick keeps you from working. But what happens if you survive?
After 2006, your chances of getting hired after a medical illness such as cancer or a positive genetic test will be extremely limited.
Congress plans to rush through a law building a national electronic health information network that will link the nation's medical databases together for use by more than 600,000 health-related corporations, employers, individuals and government agencies ?without our permission.
When all 295 million Americans' medical records go online, hundreds of thousands of businesses that can access the network will be tempted to mine them for data. Who will hire us if they fear a medical illness might keep us from working or cost them money?
When Armstrong was ready to return to cycling, he was hired by a team willing to stake its future on a champion with great determination and courage.
Will the rest of us be that lucky if we survive a medical illness, test positive for the breast cancer gene, or get HIV? What about our children? Will they get their first job if they had autism, depression, juvenile-onset diabetes or a grandparent with Alzheimer's?
Who will hire us or our children if potential employers can read our medical records?
Until April 2003, patients controlled access to their personal medical records. Since then, more than 600,000 private corporations, employers and government agencies have federal authority to see and use those records.
Unless patient control is restored, the proposed national health information network will give businesses the opportunity to discriminate against every man, woman and child in the country. Medical records will become as available as credit and financial records ? and just as impossible to protect and keep private. Identity theft will grow exponentially. Imagine the future: bosses and bankers being able to Google not only credit records, but medical, genetic and prescription records.
When every medical database can be data-mined through a national health information network, there will be a frenzy of corporate and government dossier-building, commercial use and surveillance. Patriot Act surveillance is nothing compared to what the proposed health IT bills allow.
Getting a job offer should be based on who can do the work, not fears about their future health.
As a physician for more than 30 years who has seen rampant job discrimination against people with mental illnesses and addictions, I know firsthand that many employers, upon learning employees have a disease or survived cancer, have fired them, denied them promotions or reassigned them to jobs they can't perform.
Look at Wal-Mart. The world's largest private employer just got caught planning to use employees' medical records to make decisions about hiring, promotions and health benefits.
IBM recently announced that it would not use employees' genetic records for hiring or promotions. But why does IBM have those records in the first place? What stops IBM from using the rest of the employee medical records they possess?
Soon every self-insured employer will have legal access to our medical records via the national health information network.
Congress should fix this proposed legislation before it destroys everyone's medical privacy. But it won't unless Americans speak out.
The fix is simple: restore patient control over who can see and use personal health information before building any national electronic health system. Here are the changes needed:
?Allow patients to opt-out of electronic health networks.
?Restore the right of consent (the right to control who can see your medical records).
?Allow patients to segment sensitive medical records.
?Require audit trails of all disclosures.
?Require patient notification of any data breaches.
?Add criminal penalties for use or possession of medical records without permission.
The dangers of a national electronic health-care system without patient privacy rights are obvious: no one's life or ability can be predicted by genetic tests or medical records. No one is their diagnosis. But access to sensitive medical data will tempt the owners of sports teams, employers, bankers and insurers to predict whether we live or die.
We need ironclad privacy protections to ensure that medical databases and online networks are secure and private. Tell your representatives in Congress to fix the proposed health IT legislation.
I bet cancer survivors would agree that you should be hired based on what you can do, not on your diagnosis. They've been there.
Peel, a psychoanalyst in private practice in Austin, is chairman and founder of the Patient Privacy Rights Foundation. A petition on this issue can be found at www.patientprivacyrights.org.
Find this article at:
http://www.statesman.com/opinion/content/editorial/stories/21peel_edit.html
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<DIV>COMMENTARY</DIV>
<H1><FONT size=3>Peel: In 2006, could having cancer cost you a job?</FONT></H1>
<H2><FONT size=3>Deborah C. Peel</FONT></H2><SPAN class=date>Saturday, January 21, 2006</SPAN>
<DIV>Lance Armstrong's team cancelled his contract when he got testicular cancer. Fair enough, if being sick keeps you from working. But what happens if you survive?</DIV>
<DIV> </DIV>
<DIV>After 2006, your chances of getting hired after a medical illness such as cancer or a positive genetic test will be extremely limited.</DIV>
<DIV> </DIV>
<DIV>Congress plans to rush through a law building a national electronic health information network that will link the nation's medical databases together for use by more than 600,000 health-related corporations, employers, individuals and government agencies ?without our permission.</DIV>
<DIV> </DIV>
<DIV>When all 295 million Americans' medical records go online, hundreds of thousands of businesses that can access the network will be tempted to mine them for data. Who will hire us if they fear a medical illness might keep us from working or cost them money?</DIV>
<DIV> </DIV>
<DIV>When Armstrong was ready to return to cycling, he was hired by a team willing to stake its future on a champion with great determination and courage.</DIV>
<DIV> </DIV>
<DIV>Will the rest of us be that lucky if we survive a medical illness, test positive for the breast cancer gene, or get HIV? What about our children? Will they get their first job if they had autism, depression, juvenile-onset diabetes or a grandparent with Alzheimer's?</DIV>
<DIV> </DIV>
<DIV>Who will hire us or our children if potential employers can read our medical records?</DIV>
<DIV> </DIV>
<DIV>Until April 2003, patients controlled access to their personal medical records. Since then, more than 600,000 private corporations, employers and government agencies have federal authority to see and use those records.</DIV>
<DIV> </DIV>
<DIV>Unless patient control is restored, the proposed national health information network will give businesses the opportunity to discriminate against every man, woman and child in the country. Medical records will become as available as credit and financial records ? and just as impossible to protect and keep private. Identity theft will grow exponentially. Imagine the future: bosses and bankers being able to Google not only credit records, but medical, genetic and prescription records.</DIV>
<DIV> </DIV>
<DIV>When every medical database can be data-mined through a national health information network, there will be a frenzy of corporate and government dossier-building, commercial use and surveillance. Patriot Act surveillance is nothing compared to what the proposed health IT bills allow.</DIV>
<DIV> </DIV>
<DIV>Getting a job offer should be based on who can do the work, not fears about their future health.</DIV>
<DIV>As a physician for more than 30 years who has seen rampant job discrimination against people with mental illnesses and addictions, I know firsthand that many employers, upon learning employees have a disease or survived cancer, have fired them, denied them promotions or reassigned them to jobs they can't perform.</DIV>
<DIV> </DIV>
<DIV>Look at Wal-Mart. The world's largest private employer just got caught planning to use employees' medical records to make decisions about hiring, promotions and health benefits.</DIV>
<DIV> </DIV>
<DIV>IBM recently announced that it would not use employees' genetic records for hiring or promotions. But why does IBM have those records in the first place? What stops IBM from using the rest of the employee medical records they possess?</DIV>
<DIV> </DIV>
<DIV>Soon every self-insured employer will have legal access to our medical records via the national health information network.</DIV>
<DIV> </DIV>
<DIV>Congress should fix this proposed legislation <I>before</I> it destroys everyone's medical privacy. But it won't unless Americans speak out.</DIV>
<DIV> </DIV>
<DIV>The fix is simple: restore patient control over who can see and use personal health information before building any national electronic health system. Here are the changes needed:</DIV>
<DIV> </DIV>
<DIV>?Allow patients to opt-out of electronic health networks.</DIV>
<DIV> </DIV>
<DIV>?Restore the right of consent (the right to control who can see your medical records).</DIV>
<DIV> </DIV>
<DIV>?Allow patients to segment sensitive medical records.</DIV>
<DIV> </DIV>
<DIV>?Require audit trails of all disclosures.</DIV>
<DIV> </DIV>
<DIV>?Require patient notification of any data breaches.</DIV>
<DIV> </DIV>
<DIV>?Add criminal penalties for use or possession of medical records without permission.</DIV>
<DIV> </DIV>
<DIV>The dangers of a national electronic health-care system without patient privacy rights are obvious: no one's life or ability can be predicted by genetic tests or medical records. No one is their diagnosis. But access to sensitive medical data will tempt the owners of sports teams, employers, bankers and insurers to predict whether we live or die.</DIV>
<DIV> </DIV>
<DIV>We need ironclad privacy protections to ensure that medical databases and online networks are secure and private. Tell your representatives in Congress to fix the proposed health IT legislation.</DIV>
<DIV> </DIV>
<DIV>I bet cancer survivors would agree that you should be hired based on what you can do, not on your diagnosis. They've been there.</DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV>Peel, a psychoanalyst in private practice in Austin, is chairman and founder of the Patient Privacy Rights Foundation. A petition on this issue can be found at www.patientprivacyrights.org.</DIV>
<DIV>
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<TD class=font-cn><SPAN class=fonttitle><STRONG><FONT face=Verdana size=2>Find this article at:</FONT></STRONG></SPAN> <BR><A href="http://www.statesman.com/opinion/content/editorial/stories/21peel_edit.html" target=_blank>http://www.statesman.com/opinion/content/editorial/stories/21peel_edit.html</A> </TD></TR></TBODY></TABLE></DIV></DIV>
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