Talk

Over at My Biotech Life, Rick has given us a dozen links and a nice pun for the latest Gene Genie carnival. Thanks Rick!

Technorati Tags: gene genie, genes, dna, blogs, carnivals

Technology visionary Esther Dyson offers up a “Full Disclosure” about her motivation to participate in the Personal Genome Project in today’s WSJ. Along with 9 other science-savvy people, Ether will have her genome sequenced and made public — along with personal health and behavioral information to help put that genetic data into context.

Why expose yourself publicly to achieve a scientific goal, some may ask? Adding faces and high-profile personalities does provide for thoughtful pioneering discussion from experts-as-participants, as Dyson points out. And no doubt it’s a lot sexier to the media and the general public. These 10 individuals are not only pioneering the discussion but they’re helping to engage the larger, lay public in this discourse.

I don’t have any deep secrets or vulnerabilities that would embarrass or create risks for myself, or for relatives who share my genes. … But what about the people who are less fortunate than me? I want to push questions about those less lucky to the fore — and get us all to think about them. It’s not just who gets health care and how it gets paid for, or whether employers can discriminate against people with certain conditions or just a greater-than-average propensity for them. What of someone who has a particular susceptibility to, say, alcohol? Does he pay an extra tax on booze? Or does he get a tax credit for behaving well, while a less susceptible person is denied the opportunity to benefit by behaving “properly”? (Subsidies and penalties cut both ways.) Should people have the right to refuse subsidized medical care and live as they wish? These questions may sound far-fetched, but they won’t be once society knows enough information to start asking them.

Over at Epidemix, Thomas Goetz raises the question, “When people agree to donate their body to science, will their genome be part of the deal? And will that make people even less inclined to donate?”

My question is one that comes out of Esther’s observations about the limits of a research study. (”But if someone has a marker indicating a possibility, not a certainty, of some condition, what should the project do?) One you’ve got your personal genome, who’s going to make sense of it?

Jason says his head is spinning looking at the data of one person’s genome. No doubt graphics and tools are one part of the equation necessary to grapple with the enormity of personal genome data. But it’s all beautiful noise until we can make it useful: medical interpretation, editorial translation, and risk-counseling expertise will be the keys to integrating personal genomes into our lives.

Not sure how I missed this, but in May the popular diabetes magazine Diabetes Health ran a short article announcing the test. They included a nice quote from my boss, Ryan:

“The deCODE test can provide new insight for those concerned about the possibility of developing type 2 diabetes. The results of this genetic test, along with the support provided by our team of genetic counselors, can help people understand their risk of developing this disease and provide them with valuable information to help prevent the onset of disease.”

The online version of the article even includes a link to the DNA Direct website. Genetic counseling got mentioned (it usually ends up on the editor’s floor, even though it’s an important aspect of genetic risk testing). Nice PR!

Technorati Tags: diabetes, decode, decode T2, risk, dna direct

A number of new and wonderful blogs have joined the DNA Network:

• Discovering Biology in a Digital World
• Sciencebase Science Blog
• The Daily Transcript
• The Personal Genome
• The Tree of Life
• VentureBeat
• www.cancer-genetics.com

I’m happy to see Jason posting again, and to see that Ramunas Janavicius has begun a blog dedicated to cancer genetics, a personal interest of mine.

Alas, so many blogs, so little time…!

Technorati Tags: dna, blogs, dna network, genes, genetics, genome, cancer, information

Anyone looking for information on genetic diseases will be thankful for Scienceroll’s advice on “how to search for genetic conditions”. This list of Top 10 Sites is wonderful list for students, scholars, clinicians and people seeking diagnosis.

Here’s the inspiration behind his top 10 post:

Some months ago, I wrote about Juan Magdaraog who is blogging about his struggle with Pompe disease, a rare, but important genetic condition. He let me know about an essential problem: the diagnostic delay. … Look, we can’t expect physicians (from any kind of medical specialties) to know everything about all the cc. 4000 genetic conditions. But we can help them how to find relevant information and quickly understandable material on genetic conditions.

Thanks for the tips, Berci! Most of these sites live in my bookmarks, but your post reminded me that the goal of making genetics accessible means making our process transparent, too — the tools, the references, the analysis.

Technorati Tags: search, genetics, diseases, conditions, tips, top 10, websites, scienceroll