GENETIC PRIVACY LAWS FAIL

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KEEP YOUR GENES PRIVATE

The more doctors know abut your genes the easier it will be to prevent, treat, and cure an illness. Today a genetic test can tell whether you inherited a high risk of a disease, and you could benefit from preventive care.

How can your genetic information be kept private?  Genetic tests could reveal your genetic endowment and be embarrassing and a stigma.  Insurers could deny you health coverage or raise your premiums. If your employer saw the results, he could deny you a job, or even fire you. The potential to improve health care would not be achieved if you refused to participate because you feel your information would be misused.

Almost all illnesses have a genetic component.  Genetic testing has not been widespread, despite the Human genome Project completed 6 years ago.  Testing is still costly, often several thousand dollars for each test.  There are no standards useful for assessing your health risk. Switching to electronic records will make your genetic information more accessible.  It is hard today to assure you safeguards to your genetic privacy, despite the non-discrimination Act passed last year.  Researchers are now looking at interactions of multiple genes and environmental factors that cause  asthma, cancer, heart disease and diabetes.

There are over 1500 genetic tests now in use.  Soon all health records will contain substantial genetic information. Researchers are looking for a single change in hundreds of thousands of nucleotide bases, using the famous letter of the DNA code: A., T, C, AND G letters.  You  certainly want:  personalized medicine, drug therapies tailored to your body, and ways to improve drug effectiveness and reduce drug side effects.  This will depend on available genome analytical tools. 

PHARMACO-GENOMICS AND TOXICO-GENOMICS

Even today drugs and dosages for treatment of certain cancers are selected using genome tools.  How you respond to toxins will become important to check your health risk at work and at home.

ELECTRONIC HEALTH RECORDS (EHR)

This should improve health care quality and reduce health costs.  Your records will include all your medical information from cradle to grave.  Paper records only maintain privacy by chaos.  With a fragmented system, it is hard to compile or even find your records from all your doctors over several years.  

You will not have the luxury to selectively recall the facts or get treated by one doctor without the knowledge of another doctor knowing.  Your depression at a college clinic will be a permanent part of your EHR.  You might be stigmatized because you forego or delayed treatment for drug abuse.  A doctor treating you for  a sprained ankle does not need to know if you are predisposed to breast cancer.

What information can be restricted from a health provider?  Would you get complete control of your health records, letting you remove certain information, showing only  the details needed for a given diagnosis, and only disclosing or blocking  any information in your file?This option I think would be rarely exercised.  Could you prevent the routine disclosure of sensitive health information on domestic violence, substance abuse, sexual disease, mental health, and genetic information?

How can you strike the right balance between general and narrow disclosures? If you have too much control, the accuracy and completeness of your records will suffer. Your history would again have to be taken and new tests ordered.  Could you defensively opt out of the electronic records by paying cash or declining certain care if you worried about sensitive information? How can the doctor know about possible drug interactions, if he doesn’t know what drugs you took?  Would your file indicate that some information would not be available at your request?  If you are in an emergency situation, can the doctor lift these restrictions you placed?

THE PRIVACY RULE OF 2003 HIPAA

It applies only to entities that only handle electronically your health claims.  Doctors who take cash payments, fitness clubs that ask for your medical information, and doctors working under contract to third parties as a clinic in your work place, are not covered by this rule.

Complaints to the rule seldom are assessed and wrongdoers face few deterrents.  It also applies to entities in health care.   You might be concerned about the stigma or discrimination from non health care people, as when you apply for a job, get an insurance policy, or file for worker compensation  benefits.  These administrators require you to sign an authorization directing your doctor to release all your health information.

Your health can have bearing on health care decisions made.  Does an insurance adjustor handling a claim for your chipped tooth need to know your genetic test results?   EHR might solve these problems.  Software could scan records and only select the data relative to an inquiry.  This technology is not available now.  

TREATING GENTIC INFORMATION DIFFERENTLY

Sensitive health information would be treated different than genetic information.  But is this desirable?

Twelve states now require you to give written informed consent for a genetic test, and 27 states want express consent to disclose the test results.  Yet insurance companies and employers legally require you to sign an authorization for release of medical information.35 states prevent employers from requiring you to have a genetic test as a condition for employment.  Yet an employer can make you release your medical records as a condition of being hired.

You can get three kinds of  medical insurance: individual, as a group, or federally with Medicaid or Medicare.  Groups and individual plan underwriters want to know the risk they are taking.   Since they are covering the health care collectively  they can charge premiums based on their risks.  Their  main purpose is to protect the financial interest of the their  company.  Insurance companies want to know about all your past ailments and possible future illnesses so they can give you a premium price or deny you insurance.

Since Medicare and Medicaid are entitlement not insurance, the rules don’t apply.  Since there are no rates to adjust, the government doesn’t need to look at your genetic information. Getting life insurance, how can you be reassured that your records are not stolen or disclosed improperly?

It is unlikely that universal health care will happen soon.  We need better privacy laws now that electronic health records are a reality.  Today over a third of people refuse genetic testing because of fear of discrimination.

HURDLES TO ADDRESS

How you can get insurance and keep your right of privacy from employers?  The amount of disclosures should be limited, and you should have  recourse when you are harmed by these disclosures,  Disclosure should be limited to relevant health information. Source scientific American September 2008

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