Comment by prat | Hacker News Reader

Comment by prat | Hacker News Reader

These are my first impressions on reading this and parts of other linked articles in it. My opinions are fallible and often change over time.

First, being in the field and a part of the teams that first published the general human genome and the individual human genome, I know that our current knowledgebase of genomic variant <-> disease correlation is not very vast. We don't even know how much more or less important are the particular type of variants "SNPs" that personal genomics companies mostly mine, in comparison with other types (Insertion/deletions , structural variations, copy number). At more serious genomics research institutes, we are still trying to figure out the genetic pathways that might be affected by this mutation or that - far from actually predicting their effects on actual physical condition. So does that mean personal genomic companies are far ahead of institutes in their research? I am not so sure.

Second, I think we need regulation here for the same reasons that we need net neutrality. I wouldn't be surprised if with time, the reports start advising you on which of the alternative drugs would be most beneficial for your genotype and disease. I would still be okay with it if companies like 23andme published their research or atleast cited publications - but I am not sure they believe in public access when it comes to their findings. (I can be wrong on that - so correct me if you know better)

Finally, I actually like the prospect of public driven science in addition to just organization/scientist driven, as that is likely to fund some actual science in addtion to pseudo science. So one solution I can think of is for FDA to approve a most trusted mutation screen for all these personal genomic companies to abide by. Let them focus on their core competency which is sequencing and customer interface and not research, If however they come across findings that might be beneficial, let them publish it in a peer-reviewed journal and apply to FDA to add it to the universal mutation screen.

Second, I think we need regulation here

You have no business telling other people what information they can or cannot acquire, and by what means they do so. Even if you're right, you still have no business dictating to others what they can and cannot do, simply because you consider yourself to be more learned and qualified to make a diagnosis.

I went to the doctor. I needed to have specific tests done, because my ethnicity is prone to very specific genetic defects in children. My wife and I needed to know if we had the appropriate markers and if precautions should be taken. I was quoted $3000 per person. That would be $6000 for myself and my wife.

23andme does those same tests and more, for $100 each. On top of that, our doctor is willing to use their results and add it to our medical records.

Again, who declared you or anyone, fit to determine which information I'm privy to and how I go about retrieving it?

So I assume you are also against FDA regulation to force pharma companies to list adverse reactions alongside there drug commercials? If you are, then the discussion is mute, if you aren't then your point is.

I think there's a large difference between prohibiting the disclosure of information, and requiring it.

> you still have no business dictating to others what they can and cannot do, simply because you consider yourself to be more learned and qualified to make a diagnosis.

You cannot lie to the consumer about your product.

Who lied? 23andme is a social network with a twist. They are not pretending to be your doctor. In fact, they make you read various disclosures that reinforce that self-obvious fact.

I was responding specifically to the claim that "you still have no business dictating to others what they can and cannot do." As far as 23andme is concerned, if they are not making any medical claims then they should have nothing to worry about. The linked to article linked to another article that said as much.

So does that mean personal genomic companies are far ahead of institutes in their research?

Does it matter? Maybe they will contribute something useful, maybe they won't.

If we shut them down now, they definitely won't.

Second, I think we need regulation here for the same reasons that we need net neutrality.

To prevent service providers with a government granted monopoly from extorting payments from the rest of the economy?

Is this a serious danger in the personal genomics market? I was under the impression that the FDA wanted to prevent consumers from purchasing genetic tests without receiving permission from another government granted monopoly (doctors).

Does it matter? Maybe they will contribute something useful, maybe they won't.

If we shut them down now, they definitely won't.

Exactly - that's why I say don't shut them down, regulate them.

To prevent service providers with a government granted monopoly from extorting payments from the rest of the economy?

Is this a serious danger in the personal genomics market? I was under the impression that the FDA wanted to prevent consumers from purchasing genetic tests without receiving permission from another government granted monopoly (doctors).

There is no govt.granted monopoly here. All they want is to be sure that a medical advice is givem by 1) qualifieed entity 2) if 1) is not possible then atleast based on research done by a qualified entity (i.e. published results)

There is no govt.granted monopoly here.

The AMA is a government granted monopoly.

Regardless, could you further explain your analogy to net neutrality? I can't even imagine what combination of misconceptions about net neutrality and personal genomics led you to make such a comparison.

All they want is to be sure that a medical advice...

Personal genomics companies do not give out medical advice. They give out genetic information.

The proposed regulations would require you to get the permission of a doctor (or other clinician) before you can have your DNA sequenced, and the data would be available only through the doctor.

I can't even imagine what combination of misconceptions about net neutrality and personal genomics led you to make such a comparison.

Strong words - try just asking and I'll answer :). Here is where the comparison comes from.. The same way that net neutrality aims to prevent carriers from promoting one hosts content over another, this decision aims to potentially prevent advising on drug response from one pharma company vs. another. Not that this is already happening, but policies should be as forward looking as possible.

The proposed regulations would require you to get the permission of a doctor (or other clinician) before you can have your DNA sequenced, and the data would be available only through the doctor.

Did you read my original parent post ? if not read it now - the last paragraph. I am not in favor of the govt having a doctor grant permission, but for FDA to make a universally trusted mutation screen through which all DTC companies operate. FDA makes not money, no monopoly and DTC companies have a way to get new findings added to the mutation screen through proper channels (published papers)

Reply on news.ycombinator.com