Bio Saga Blog - A Chronicle of Life Sciences & Informatics

Inching toward the  Dawn of the GATTACA era ! , making up history as we went along.  A group of researchers will use a $2.5 million federal grant to study the ethical and legal implications of providing genetic research results to the relatives of people who donated samples to biobanks, Mayo Clinic said today. The grant from the National Cancer Institute and the National Human Genome Research Institute will fund researchers at Mayo, the University of California, San Francisco, and the University of Minnesota who will study what families prefer, will analyze the legal and ethical issues, and propose recommendations for best practices policies. "Substantial debate surrounds the question of whether researchers have an ethical obligation to return individual research results to genetic relatives of patients, especially when the patient has died, and incidental findings have potential health or reproductive importance for kin," Gloria Petersen, the Purvis and Roberta ...

A thorough discussion about personal genomics — what it means for the average consumer, the health care system, and the research community often raises more questions than it answers. While the public discourse on genetic privacy can be traced back to the days of the Human Genome Project, only recently has a new era been ushered in thanks to the steady decrease in the cost of DNA sequencing with promises of a tailor-made approach to medical treatment and new discoveries from rich genetic data sets. Depending on whom you ask, personal genetic information should either be protected at all costs as personal property or is merely information fit to published online for the whole world to see and contains nothing more revealing about health than, say, the knowledge that someone smokes. That there is such concern over whether genetic information is more vulnerable to attack or misuse than traditional personal health care records may be an unintended consequence of the hype that touted perso...

The tables turn, it's 23andMe's turn to send a letter to FDA... Continuing the story  Reading Between Lines   slapped with cease and desist  letters . Direct-to-consumer genomics firm 23andMe has sent a letter to the heads of the US Food and Drug Administration and National Institutes of Health asking for a collaborative effort to develop guidelines for genetic testing. The firm  posted the letter  that it sent to FDA Commissioner Margaret Hamburg and NIH Director Francis Collins on its blog, The Spittoon, last night. 23andMe is one of several companies to be targeted recently by FDA, which  sent letters to several firms  saying that it believes the firms are selling unapproved diagnostic devices. The other firms that received letters were Knome, 23andMe, Decode Genetics, Navigenics, and Illumina, the last of which was cited for providing the tools that are used to provide genetic information to certain of the DTC genomics' customers. In the letter...

Previous blogging on the topic of GINA GINA Aftermath - Consumers Still Wary of Genetic Tests and in the series of blogs closing following the personal genomics industry scene . Now here is some thing very interesting and very vital that is about education the common man about GINA. Johns Hopkins University’s Genetics and Public Policy Center has launched an educational effort aimed at informing the public of how their genetic data can and cannot be used under the recently enacted Genetic Information Nondiscrimination Act. As part of its so-called “Project GINA,” the GPPC plans “to disseminate information” about the legislation to healthcare stakeholders and the general public, GPPC Law and Policy Director Susannah Baruch told last week. As part of its plan, the GPPC will launch a web site describing and explaining the federal law that bars health insurers and employers from discriminating based on genetic data. The website, slated to launch in September, will outline what protection...

The last time i blogged on this issue Reading Between Lines and now California will allow two of the fourteen consumer genomics companies it slapped with cease and desist letters two months ago to again market their genotyping services in the state, the state’s Department of Public Health confirmed Thursday. The CDPH inspected both companies, and on Aug. 7 it granted a license to operate in the state to Navigenics and a week later it gave one to 23andMe. Both of these companies were among the group that CDPH in June said were operating outside of state regulations. “State law requires these laboratories to have a license, obtain a physician's order from the consumer and demonstrate how they validate the results of their tests,” “several” other of the companies that received the cease-and-desist notification have now applied for licenses in the state, but noted that the state is not currently disclosing further information about how it is investigating the other laboratories. N...

In the series of blogs on the aftermath of GINA, first it was the consumers GINA Aftermath - Consumers Still Wary of Genetic Tests and now its the turn of the firms Gene Testing Questioned by Regulators , Consumer Genomics Firms Confused by California's Actions; State Seeks Federal Solution be is consumer or the firm no body is spared, as President Bush often quips "justice is served" and all are same in the eyes of Democracy. Well will Mr.Governor Arnold Schwarzenegger come up with a quick solution for this?

It is true that the DNA has become vernacular now, blogging previously on the Genome entering the drawing rooms in Dawn of the GATTACA era! found another cute, small and interesting article which relates to this interesting fact on how common a word is the "DNA" now When you care enough to send the very best DNA . After reading it i felt in days to come, well we might have MATTEL come out with a "Francis Crick DNA code-breaker toy" fighting and saving the world and a "Craig Venter" toy challenging him...

The Genetics Information and NonDiscrimination Act passed unanimously today. GINA has sowed the seeds for... I am sure that every one remembers Gattaca 1997 SiFi flick. A genetically inferior man assumes the identity of a superior one in order to pursue his lifelong dream of space travel. During this time society analyzes your DNA and determines where you belong in life. Vincent the protagonist is one of the last "natural" babies born into a sterile, genetically-enhanced world, where life expectancy and disease likelihood are ascertained at birth. The Gattaca era is now here we are living it, the Genome enters your drawing room of your very home, and people can exchange their gene cards with your medical practitioners. May be very soon even sit at a fertility clinic and discuss the traits of your to be new born. Now the Genome enters the White House oval office too Avatar GINA! What is the Genetic Information Nondiscrimination Act? The Genetic Information Nondiscrimina...