Debating Genomic Medicine

Ethicists debate whether genomic medicine is ready for use in clinical, DTC contexts.

Full-text access for registered users only. Existing users login here.
New to GenomeWeb? Register here quickly for free access.

It's clear the medical

It's clear the medical industry isn't ready to handle genetics. Leave THEM out and let people have their data. I'm sick of the ethics questions people think they are in charge of. It isn't up to them to decide what others can know. If they aren't capable of understanding the value of knowing a BRCA mutation early in life, don't make that the public's problem.

Ross asks why Collins got 3 different results and one of her questions is, "Is one test better than another?" That's reason enough to keep this information away from the med industry. They aren't ready for prime time.

DTC genetic testing is fine. It just needs a much clearer definition of risk. It could be a perfect time to explain what relative risk is, to teach people a few things they should have learned in school. Advertising can do this. Look what it does for drugs with TV advertising. It would be wonderful to see the same medium used to actually do good. It can be done. Look at the smoking ads recently.

And the word epigenetics can also be learned. Might make for healthy lifestyle changes, Frankly, I'm sick of the debate. Information needs to be free. Problems will crop up. Problems have answers, but it is clear the people discussing it now are on the wrong path. Note to Ross: people understand the will die of something.

I think the discussion was

I think the discussion was about discordant results for Dr. Collins stems from older versions of genotyping tests from 23andme, Pathway Genomics and Navigenics, which use very incomplete data so no wonder there is no consistency. These types of analyses based on combination of number of markers with very small odds risk ratios (1.01-1.2) that are not reliable. In contrast the BRCA mutations produce >20 fold increase in risk of cancer and are very penetrant. So discussion of "reliability" of test results has to distinguish both technology (genotyping vs sequencing) and the risk ratios!

I agree. Doctors are not

I agree. Doctors are not going to understand the research anyway. More importantly, discoveries of new genetic connections to various diseases would require new analyses of each patient's genomic sequence. That information would then have to be filtered back to the patient through their doctor. This presumes that there would be a protocol in place to systematically allow for a review of risks and options for proactive or future treatment. How long will it take for the medical community to get up to speed on this? Most patients will be taking their genome to their doctor demanding an informed opinion that will just not be there.

Doctors are not going to

Doctors are not going to understand the research anyway. More importantly, discoveries of new genetic connections to various diseases would require new analyses of each patient's genomic sequence. That information would then have to be filtered back to the patient through their doctor. This presumes that there would be a protocol in place to systematically allow for a review of risks and options for proactive or future treatment. How long will it take for the medical community to get up to speed on this? Most patients will be taking their genome to their doctor demanding an informed opinion that will just not be there.

In my experience, there is a

In my experience, there is a broad range of doctors' understanding of genetics and genetic contributions to disease. Only a decade ago I had to explain to an MD how two parents with type O blood could have a child with type A blood (i.e., both parents were AO, not OO). Family history still plays an important role in assessing a patient, and most patients understand that having a parent die of cardiovascular disease doesn't mean that they will die of CVD, too -- but it may increase their risk. Much genetic data is in this same boat -- conveying increased risk in the absence of certainty. Assuming that doctors should be the only gatekeepers of this information is not only paternalistic and condescending, it disenfranchises patients from taking an active part in their own healthcare. Explain what is known about genetic variants, encourage patients to follow research progress, engage them and engage with them. Doctors should be more respectful of patients' autonomy.

My genetics, genome, etc are

My genetics, genome, etc are MY data, as well as any medical tests, etc. Doctors and caregivers cannot and should not play God and decide what we can and cannot have-this is unethical. What would be helpful is educating patients about the data (as much as they are able), or refer them to someone who can provide genetic counseling, and let them decide whether they want the data. If they want the data, it should be provided and should not be regulated by the FDA or any other government or non-government organization.