DNA donor rights affirmed : Nature News & Comment

DNA donor rights affirmed : Nature News & Comment

"It is a familiar scenario in genetic research: a subject's DNA is collected for one study, deposited in a database or biobank and then analysed by other researchers for separate studies. But what happens when a later study stumbles on something that could be of significance for the donor....."

"..... But, increasingly, geneticists are embracing the idea that research participants have a right to know of any unwelcome surprises in their genome...."

"The need to establish policies for the return of results has grown with the proliferation of whole-genome sequencing, says James Evans, editor-in-chief of Genetics in Medicine, which is publishing an entire issue on the return of results in genetic research, along with the consensus statement."

abstract: Strengthening the Case for Stool DNA Tests as First-Line Colorectal Cancer Screening: Are We There Yet? (of interest to Lynch Syndrome patients/genetically predisposed)

Blogger's Note: while limited information is available through the abstract it does touch on patient issues regarding screening, this will be of interest to Lynch Syndrome/genetically predisposed patients for which guidelines recommend frequent screening (standard colonoscopy vs virtual colonoscopy)

Abstract

"The incidence of and mortality from colorectal cancer (CRC) have decreased in countries that have established population-based screening programs. In the United States, incidence rates decreased 4% annually from 2003–2007, and mortality decreased by 3.3% per year.¹ During this same time period, rates of screening in the U.S. increased from 50% to 65%,² with colonoscopy-based programs being the predominant strategy in many regions of the country. However, despite increased public education and improved access to colonoscopy in the U.S., 35% of patients still fail to undergo CRC screening,² likely because of this procedure's invasiveness, need for bowel preparation, as well as sedation and missed days of work. Furthermore, the effectiveness of colonoscopy, which has long been considered the gold standard in CRC screening, has recently come into question, with population-based studies demonstrating disappointing outcomes with right-sided lesions and serrated adenomas."