Bioethics Panel Urges More Gene Privacy Protection

Gene-mapping has become an important factor in providing more useful health and medical information.  The idea of being able to detect any diseases that might affect an individual in the future can be thought of as a great thing, especially since the costs of this test have decreased, including in comparison to other single gene mutation tests.  It has been found that DNA decoding is legal in more than half the US, but there is now concern about the privacy issues that might prevail.  For example, if gene-mapping becomes common practice in a visit to the doctor's, who will be allowed to see the results, when can the test can be taken, and how will it be administered?  How long will it take for a law to pass that prohibits the sharing of genetic information from clinical studies?  Will doctors be able to warn patients about any other diseases they may have if they are only specifically checked for one?

Although a law has already been passed that prevents employers/health insurers from discriminating against genetic information, life and long-term care insurances have not been incorporated into that law.  Electronic storage of such information has not even proven to be fully secure.  These are just a few of the worries that have peaked interest in looking more into gene-mapping before it becomes a test accessible by 100% of the public population.

 

I never thought of gene mapping to be available as a regularly run test so soon.  The fact that the expense of the test has even come down surprises me because I would assume costs to remain high, if not increase once it is completely available to the public of all US states.  One concept I never thought of when it comes to privacy has to do with hereditary information.  If a person is diagnosed with an inherited disease, he/she might show results to a relative that could have it.  If the relative never wanted to know about a medical condition, that could be a violation of his/her privacy.  I was also surprised to read that a doctor could keep information private about other possible diseases a patient might have if only one specific mutation is being looked into (unless a waiver is signed).  It is a shame that there are even loopholes with something as personal as the release of one's genetic data.