Bioethics Blogs

Open-Source DNA

Prometheus Brings Fire by Heinrich Friedrich Füger

About a year ago, Steven Brenner posed this question in Nature,

How long will it be until an idealistic and technically literate researcher deliberately releases genome and trait information publicly in the name of open science?

We now seem to be well on our way.

For just $5 and your acknowledgement of the fact that DNA variations offer limited information (so you really ought to discuss the findings with a doctor or genetic counselor), an online venture called Promethease will provide you with the full explanation of your 23andMe health data in just 15 minutes, FDA be damned.

Promethease acknowledges that “For now, consumers have to fend for themselves in a thicket of scientific information—and make their own decisions about risks.” Apparently, people are happy to do so; the site averages 50-500 reports each day. But the trend to gain access to genetic data isn’t merely coming from “consumers” curious about their own data; it’s also coming from researchers and companies looking to greatly expand their databases to find statistically relevant genetic variants.

Many trait-affecting alleles can only be identified by analyzing huge amounts of data, because each one has a tiny effect. For instance, some 697 variants have been identified that are linked to height, but they are only thought to represent an estimated “16% of the genetic contributors to height.” Other researchers are trying to find genes affecting intelligence (one-twentieth the influence found with height), as well as rare mutations leading to or preventing diseases (hopefully to fare better.)

For example, the Haplotype Reference Consortium was unveiled in San Diego last week at the annual meeting of the American Society of Human Genetics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.