Comments on: Reading entrails, 21st-century style

By: Iddo Friedberg

Iddo Friedberg — Tue, 21 Apr 2009 04:17:49 +0000

@shwu Clients of personal genomics companies are people who can afford to pay $400-$1000 for SNP analyses and are interested enough in the power of genetics to reveal something about themselves, their futures and their pasts (some of these companies do genealogies as well). They are definitely not part of the "meh" crowd, at least not when it comes to genetics. Some of them may not be well-educated about genetics, but they do believe in its informational power, and are willing to shell out some money to receive this information. I believe that inasmuch DTC genomics are engaged in outreach activities, those are basically advertisements aimed at increasing their consumer base, I have nor problem with that. The problem lies in this gap between enthusiasm for a scientific method,and ignorance of its mechanism and limitations. In a benign scenario, this gap may lead to over-interpretation of the information by the clients. In a more malign scenario, this can lead to corporate irresponsibility, bordering on or crossing the line into fraud and quackery.

By: shwu

shwu — Mon, 20 Apr 2009 18:55:43 +0000

Great piece, Iddo. I think one of the things to stress about companies like 23andMe is that they are trying to engage more people in learning about themselves and about biology. A lot of scientific knowledge is viewed by the public with a “meh, what does this have to do with ME?” attitude. So let’s tap into that. But present it in a way that is conducive to learning about the science behind it and avoid the black box quick fix infomercial that we are unfortunately starting to see (e.g. DNA-based dating services, screening babies for talents). That fact that this area is actually relevant to people’s daily lives does make caution prudent.

By: Iddo Friedberg

Iddo Friedberg — Mon, 20 Apr 2009 16:08:27 +0000

@Mr. Guniyn I wasn't referring so much to the integrity of the companies, but rather to the consumer need they are addressing: that people want to know their future. As for the issue of interpreting the results: the whole point was the danger of over-interpretation, hence the "entrail reading" phrase. This is, for example, why many countries mandate genetic testing for monogenic diseases only, where the results are unambiguous. Even so, they are presented to the paretns-to-be by a professional genetic counselor. DTC genomics companies continue to operate legally and protect themselves from lawsuits by stating that their services are for entertainment and educational purposes only. But somehow I doubt that the main interest of their clientle lies in the gene that codes for the quality of their earwax.

By: Abhishek Tiwari

Abhishek Tiwari — Mon, 20 Apr 2009 11:07:43 +0000

I agree with your opinion that concept of “Book of Life” is very much misleading, otherwise “Book of Life” is a book with enormous gaps or missing information all of which is implicit in the properties of environment in which gene operates and nature takes them for granted.

By: Mr. Guniyn

Mr. Guniyn — Mon, 20 Apr 2009 02:53:37 +0000

Oh, and I really like that codon wheel. Do you have a link to the picture on flickr, so I can add it as a favorite?

By: Mr. Guniyn

Mr. Guniyn — Mon, 20 Apr 2009 02:52:39 +0000

There’s a lot of “reading the entrails” that goes on, but it’s easy to isolate those companies. 23andme and deCODE aren’t the entrail reading kind of companies. They provide you with your information, and whatever interpretive comments are supported by the scientific literature.

An important point to me is that even if no interpretation were being done, the service is still valuable. Full genome sequencing would certainly be better(and there are companies working on this), but I’ll take what I can get and along with that I’ll take responsibility for not over-interpreting. At least I have the option, instead of having to ask a doctor for permission to find out about myself(caveats about the quality of the info withstanding).

Proteomics might be coming to the consumer if this genomics stuff works out, so I’m really excited for what the future holds.

By: Ben

Ben — Mon, 20 Apr 2009 01:16:07 +0000

This is a very interesting perspective! I think part of what draws people to sci-fi are the ethical dilemmas posed when a society’s scientific capabilities exceeds what the society is ready for — in this case, our genetic tools exceeding our current ability to treat/quantify (or even the common man’s ability to understand) the risks that our new capabilities can assess.

What’s the solution? I’m not sure there’s an easy one, but at the most basic level we should invest in better genetics education in high school so that people don’t succumb to fallacious claims about how they have the “gay gene” or some other equal nonsense…