On BioScience and Life and Such

Genetic counseling as a patient right, not as a progress killer

In Uncategorized on June 20, 2008 at 12:57 pm

Genetic future had a thorough and balanced post on Direct To Consumer genetic testing. The following discussion between Daniel, Deepak and Dr. Murphy shed further light on the issues surrounding this topic.

Seeing this discussion from the outside I have the following thoughts to share (the text underneath is also a comment on the above mentioned blog post):

I can tell you that I live in a country where genetic testing is regulated extensively: any pre-diagnostic or pre-symptomatic test can only be done by a few authorized (public) medical genetics centers, and must be followed by genetic counseling both before and after testing. These strict test-definitions actually include “innocent” tests like cyp-testing for pharmacogenetics. I can promise you that you do not want a situation like this. Over-regulation hinders progress and takes away personal freedom. While I am sure that some regulation should be in place (like lab-analyzes quality control and restrictions to avoid overselling of tests and/or test-results), medical counsel is not really that essential. This point is underscored by the fact that patients seems to largely ignore the potential impact of even the most damning of genetic test-results (Huntington’s, see my previous posts (1, 2, 3) on genetic counseling). That said, patients that feel insecure when faced with their own genetics (which is probably a lot of them) should most certainly have the opportunity to consult a physician knowledgeable in genetics. This however, should be implemented as a patient-right rather than industry-prohibition.

And the discussion goes on

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  1. Sciphu,

    “I can tell you that I live in a country where genetic testing is regulated extensively: any pre-diagnostic or pre-symptomatic test can only be done by a few authorized (public) medical genetics centers, and must be followed by genetic counseling both before and after testing. These strict test-definitions actually include “innocent” tests like cyp-testing for pharmacogenetics. I can promise you that you do not want a situation like this. Over-regulation hinders progress and takes away personal freedom.”

    I totally agree with you in this excellent aspect. We should be expanding the services not restricting them. But that expansion should be done responsibly, ethically, and with a duty to the consumer/patient to follow up results. If your provider/SNP company can’t guarantee accurate follow up, then you shouldn’t receive the testing. I can’t assume the patient/consumer to do that theirself (is that a word?). It is my responsibility as a physician to do that follow up. This is the HUGE difference between a healthcare provider and a company.

    -Steve

  2. […] – bookmarked by 1 members originally found by misoville on July 12, 2008 Genetic counseling as a patient right, not as a progress killer […]

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