(It doesn’t explore my suggestion of profit-sharing with research subjects though, beyond the “knowledge profit.”)

Thanks for the great post. Since this is a topic that I spend a fair amount of time with I thought I’d chime in with just a couple of additional comments:

1. Regulatory Uncertainty

As both you and 23andMe rightly point out, there’s a fair amount of legal and regulatory uncertainty around this new model of customer-driven research. On the one hand, it’s a potentially powerful paradigm for locating, for instance, disease-specific research populations that have long been too difficult or expensive for researchers to cultivate on their own. On the other hand, in addition to concerns about discrimination (some of which are covered by GINA but others of which, as 23andMe quite diligently points out, are not) there is real uncertainty about whether or how traditional human subject research protections (the so called “Common Rule”) will apply to commercial genetic research.

I actually did a write-up of this very issue myself over on the Genomics Law Report (http://www.genomicslawreport.com/) just last week. The piece is available here: http://www.genomicslawreport.com/index.php/2009/07/09/genomic-research-goes-dtc/

2. The Personal Genome Project

There’s nothing wrong with your socialistic tendency (although whether or not it’s genetic is another story); in fact, there’s even a research project for you! If you’re not familiar with it already I suggest you check out the Personal Genome Project (http://www.personalgenomes.org/). Based out of Harvard Medical School it’s a non-profit research study designed to create a publicly accessible database of individual genomic data. The PGP, which is in the process of enrolling its next 100 participants and, thereafter, will move on to the PGP-1K stage, is sequencing the entire genomes of its participants and, because it’s a research project, there’s no cost (although donations are certainly encouraged). It’s not without its risks – which are all described in the informed consent documentation – but it certainly satisfies your free-use-my-results-how-you-want option.

Full disclosure: I’ve been an ethical and legal consultant to the PGP for several years and PersonalGenomes.org (which is the organizing 501(c)(3) behind the PGP) is a client of my firm.

Thanks again for the post and hope to see more on this topic soon.

- Dan Vorhaus

OTOH, one could argue that the saliva left on a water glass in a restaurant allows *public* access to one’s DNA. But, the big picture ought to be the *expectation* of privacy and the presumed ownership of one’s personal information.

Information, like water, will become in this century a great battlefield between public interest and private economic concerns. While the finance sector’s woes distract us into hand-wringing (and likely ineffective) regulatory attempts, information seems to skirt under the radar. Health care reform will only be efficient if private information is publicly managed in a way that helps reduce costs without robbing the citizen of his or her integrity as an individual.

Information is an abundant “natural” resource of our time, and the private sector managers of information and data will be like the folks upriver who control the water. The problem in public oversight, however, is that in the USA (at least) individual freedom is not separable from economic power, and those who are in control of the new information resources are laying their groundwork well. (That’ the same problem facing campaign finance reform.)

This isn’t meant to sound alarmist, just realistic. Shared information is the only way to effectively manage our economy and society. The challenge is preserving the values that make our “society” what it is (or at least what we hope it could be) while tapping the power of data.