Already a member? Log in

Sign up with your...

or

Sign Up with your email address

Add Tags

Duplicate Tags

Rename Tags

Share It With Others!

Save Link

Sign in

Sign Up with your email address

Sign up

By clicking the button, you agree to the Terms & Conditions.

Forgot Password?

Please enter your username below and press the send button.
A password reset link will be sent to you.

If you are unable to access the email address originally associated with your Delicious account, we recommend creating a new account.

ADVERTISEMENT
ADVERTISEMENT

Links 1 through 10 of 26 by Steve Mount tagged right_to_know

Share It With Others!

"as the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public."

Share It With Others!

Matt Ridley has written a simple, accessible summary of the case for and against FDA oversight of genetic testing.

"most results are anodyne and close to useless in terms of telling you how to live your life, but that is not how it sounds on the websites. However, this is not an argument for FDA medical-device regulation or requiring doctors' prescriptions before testing. It is an argument for plain, old-fashioned truth-in-advertising regulation of the kind effected by the Federal Trade Commission.

"No more than rabbits can stop themselves from breeding can regulators keep from expanding their empires whenever opportunity strikes, or doctors and high priests help jealously guarding their privileged monopolies on sacred knowledge. If software engineers had only managed to turn themselves into a guild, they would now demand that we use the Internet through them alone."

Share It With Others!

Maynard Olson reviews two books on personal genetics, weighing in on the utility of genetic knowledge and the common gene common variant hypothesis. 
On "Here is a Human Being," he quotes that the “whole foray into the land of public genomes was just another form of acting out, a cry for attention, a way to ingratiate [himself] with 'the cool kids' like Esther Dyson and Steven Pinker and George Church.” ... I learned so much about [Angrist] that I lost motivation to download and examine his exon sequences."
On "The $1,000 Genome" Olson focuses on his "uneven caution." "Lay readers will absorb a genetic determinism that is simply unsupported by what we know about human disease.  ...  there is still its bald endorsement of the common-variant–common-disease hypothesis: [which] is deservedly controversial and certainly not established" (citing McClellan and King). 
His discussion of risk for hemachromatosis shows that Olson does not share my sense that we have a right to know. 

Share It With Others!

This News Focus article, the related podcast by its author, Jennifer Couzin-Frankel, and another News Focus on the genomic data explosion are part of a collection in Science reflecting on the 10th anniversary of the publication of the human genome. All the stories, and other related material, will be gathered at http://scim.ag/genome10.
This article focuses on whether researchers should share information about patients that is obtained incidental to the purpose of their study, and whether they are equipped to locate and tell the patients.

Share It With Others!

The authors recommend a "risk-stratified regulatory approach for direct-to-consumer genetic tests."  

Share It With Others!

"In two separate studies of genetic tests, researchers have found that people are not exactly desperate to be protected from information about their own bodies. Most people say they’ll pay for genetic tests even if the predictions are sometimes wrong, and most people don’t seem to be traumatized even when they receive bad news."

Share It With Others!

"David Kaufman of the Genetics and Public Policy Center in Washington DC quizzed 1048 customers who had ordered genome scans from Decode Genetics of Reykjavik, Iceland, 23andMe of Mountain View, California, or Navigenics, based in Foster City, California. Asked about changes in their behaviour between two and six months after receiving the results, 34 per cent of respondents said they were being more careful about their diet, 14 per cent said they were doing more exercise, and 16 per cent had changed their medications or dietary supplements."
Of course, ascertainment bias is an issue here. Those who pay for genetic tests voluntarily may be predisposed to adopt lifestyle changes.

Share It With Others!

The Food and Drug Administration (FDA) is reopening until September 15, 2010, the comment period for the notice that published in the Federal Register of Thursday, June 17, 2010 (75 FR 34463). In the notice, FDA requested input and comments from interested stakeholders on the agency's oversight of laboratory developed tests (LDTs). FDA is reopening the comment period to update comments and to receive any new information.

Share It With Others!

This is Daniel MacArthur and Caroline Wright from genomesunzipped.
"US authorities are going over the top, conflating the two ends of the market and exaggerating the dangers of providing genetic information directly to consumers. The risk is that they translate their own hyperbole into heavy-handed legislation without any evidence that it is either wanted or needed.
"In general we would argue that people should be free to access their own genetic data unless there is good reason to believe that doing so will cause them harm - and as long as the information is accurate and transparent.
"What is needed is measured regulation that protects unwary consumers, punishes false claims and weeds out fraudsters without destroying the potential of DTC genetics to drive innovation and educate the public."

Share It With Others!

ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT