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...

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...