Msgr. Falda: The language of the Necrogenomicon is arcane; its meaning recondite. If we give it, in its many variants, into the hands of the people, there's no telling what they may do with it!
Bro. Laxman: But, with respect: it already resides in their hands, and hearts, and indeed in all parts of them. It lives in them, and through them, and they in and through it. Most literally.
Msgr. Falda: But it requires interpretation. Trusted interpretation. Authoritative interpretation….
Bro. Laxman: To be sure, many details of life benefit from the wisdom and insight of experts. But nobody wants to do away with authorities and experts. It's merely that the people want to read the language of the text themselves, and perhaps consult with others who know more than they.
Msgr. Falda: This cannot be! If the people read for themselves a text they do not, and probably cannot, comprehend– and if they follow the guidance of whomever they will rather than that of a rightful shepherd of the flock– then they may go astray, not only in understanding but most certainly in action as well!
Bro. Laxman: But the people may already consult whomever they will, and go as they choose, and understand according to their lights, and act, possibly, in manners untoward.
Msgr. Falda: Precisely! And uncovering these truths to them all at once, in bulk, and without appropriate commentary may mislead them further! What if one of them comes to a false understanding and seeks to cut off his right hand?
Bro. Laxman: We already govern the chirurgeons, my lord.
Msgr. Falda: But… but what if one of them seeks to foment rebellion?
Bro. Laxman: We already regulate the militia, my lord.
Msgr. Falda: And what if one of them, for want of understanding, annoys a deacon with babble and the ill-gotten fruit of a meandering mind?
Bro. Laxman: Then he will tell him to stop, my lord. And perhaps help him to understand the limits of his own horizon. Knowledge is seldom fatal, and even a false understanding will seldom bring about grievous harm….
Msgr. Falda: But we are the gatekeepers, Bro. Laxman! We are the gatekeepers.
Bro. Laxman: And each of the people, my lord, is the gate. Shall we keep it closed and guarded as for war, or open as for peace, its perimeter defended?
The FDA reckons that the product provided by 23andme is medical equipment, and that some subset of the corresponding service constitutes medical advice. So the FDA wants
a piece of the actionto be sure that the people are protected from the dangers of possibly false or misleading information coming through unauthorized, unregulated channels. 23andme has been draggin' its feet in response to FDA demands, perhaps because of disagreement about whether personal genomics, a new application of new technologies, actually falls squarely within the current regulatory regime.
BoingBoing provides a cartoon and a cluster of links to articles that offer a fresh and useful overview of the issues at hand.
A bunch of dead people gave me their chromosomes. Ever since, I've been trying to figure out to how organize and use them. Not too long ago, I sank a Frank' into the "Health and Ancestry" personal genomics kit from 23andme. Just in time, since the FDA has asked them to stop making sriracha until the neighbors' complaints can be mollified. Last I heard, 23andme is making nice in words about compliance and cooperation but declining actually to comply… for now. "Can't we all just get along? I'm sure there has been some sort of misunderstanding. We've made a hash of it with our tardy replies, but we do, genuinely, truly, from the bottoms of our heart, love and respect you. It's not you; it's us."
(BTW, feel free to use me as a referral once they sort things out! That'll add $5 to my book-buyin' fund. ;) )
Did the results of my test solve any deep mysteries? No, although I learned some things about my ancestry that I hadn't previously known and have since confirmed genealogically. Did health information spur me to bum rush the medical staff at my PCP's office and demand that they do X, Y, and Z forthwith? Not at all. Was it entertaining and informative? You betcha! And did it prompt me to try to learn more about genetics, genomics, and gymnastics? Indeed, it did. I was floored by the exercise, which set a high bar, and I wouldn't call my efforts so far a ringing success, but that's ok since I'm just horsin' around.
Herewith, some observations. First, 23andme takes a conservative approach to analysis; if you download your genome info, upload it to GEDMatch, and run some alternate analyses offered as freeware by genetic hobbyists or rogue professors, you may see more– or different– information about haplogroup classifications and ethnic origins. Using a different commercial service, such as FamilyTreeDNA, may likewise provide more granular results. But for 99 clams, 23andme delivers the essential and allows some speculative tweaking to see alternate results. That's good enough for the casual consumer; those on a mission may need more.
Second, the community forum at 23andme.com is fairly primitive. For example, email notification for followed discussion threads is an all-or-nothing affair. Searching is non-existent. Redundant threads occur because there's no fast, non-awkward way to find out whether an appropriate thread already exists.
Third (and this is probably true of all personal genomics communities at present because this industry is larval), the points of light are far outnumbered by the blobs of smog. To phrase it with greater diplomacy, the discussion forum is overrun by understandbly curious and uninformed users whose questions, and whose answers to others' questions, are flat out wrong. In the midst of all that noise, a few valiant and well-informed hobbyists (plus the occasional professional) who have dedicated themselves to the task try to set things right. Sadly, the forum software sees those contributions fade rapidly into undiscoverability.
I trust the quality of discussion will improve there, and elsewhere, as education improves and interested parties take advantage. Indeed, 23andme provides a number of informative introductory videos and simple essays that lay out the basics while identifying some of the limitations and nuances. But reading and watching videos are homework, and nothing guarantees (nor should guarantee in that sort of forum) that everyone who speaks has done that homework.
Do you have some experience with personal genomics services? What was your experience? Did you learn anything surprising or interesting that you'd like to share? What do you think of the policy issues underlying the FDA's attempt to regulate 23andme?