Tag: genomics
Blog Posts (20)
June 7, 2013
Accord Aims to Create Trove of Genetic Data
[NYTimes] More than 70 medical, research and advocacy organizations active in 41 countries and including the National Institutes of Health announced Wednesday that they had agreed to create an organized way to share genetic and clinical information. Th...May 14, 2013
Angelina Jolie’s mastectomy account raises awareness of gene testing
[The Guardian] It was an extraordinarily public declaration of an incredibly private experience. But when Angelina Jolie took to the comment pages of the New York Times to declare that she had undergone a double mastectomy, she spearheaded a new awaren...April 25, 2013
Gene Patents: A Hindrance to Innovation?
[Guardian] Scientists researching diseases such as cancer are impeded by having to pay companies who own specific gene patents. You carry a set of instructions in every cell, encrypted in DNA. Your genome, 3 billion letters of genetic code, is not on...March 6, 2013
UNC Experts Propose a Framework for Genomic Screening in Healthy Adults
[Science Daily] Mar. 6, 2013 — Millions of people unknowingly carry rare gene mutations that put them at high risk of developing preventable diseases such as colorectal cancer, breast cancer, and several catastrophic blood vessel disorders. Universit...February 19, 2013
Can They Patent Your Genes?
[The New York Review of Books] Can genes be patented? This spring, the Supreme Court will hear a case that may well decide the question, and the consequences for American biomedicine could be huge. Over three years ago, in May 2009, the American Civil ...January 29, 2013
Genetic privacy: How private is private?
[Nature] How private is private? A study published on 17 January reveals vulnerabilities in the security of public databases that contain genetic data, the latest in a series of similar revelations. So far, research funders that host the databases have...January 20, 2013
It’s Legal For Some Insurers To Discriminate Based On Genes
[NPR, David Schultz] Getting the results of a genetic test can be a bit like opening Pandora’s box. You might learn something useful or interesting, or you might learn that you’re likely to develop an incurable disease later on in life. The...January 7, 2013
Delivering the promise of public health genomics
[The Guardian] Since the completion of the human genome project in 2003, scientific activities that were unheard-of a decade ago, such as sequencing the genes of a newly emerging virus in days, the ability to screen for inherited diseases and the poten...September 14, 2009
Something to Say about Personal Genomics? Here's Your Chance.
Hat tip to the Business Ethics blog for letting us know about a new research study on personal genomics, privacy and consent currently underway being conducted online from researchers at at University of British Columbia, Saint Mary’s University, & Ryerson University.…
September 3, 2009
There's Something Different About You. And You. And Everyone Else You've Ever Met. They Are All Mutants.
It turns out it wasn’t all a bunch of rubbish when our parents told us as children that each one of us was very special, in fact unique, from everyone else.…
Published Articles (7)
American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012
Response to Open Peer Commentaries on “Surrogate Decision Making in the Internet Age” Jessica Berg
American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012
Corrigenda
American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012
Review of Marion Danis, Emily Largent, David Wendler, Sara Chandros Hull, Seema Shah, Joseph Millum, Benjamin Berkman, and Christine Grady, Research Ethics Consultation: A Casebook Emily E. Anderson
American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012
Review of Robert Klitzman, Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing Sonia M. Suter
American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012
Surrogate Decision Making in the Internet Age Jessica Berg
American Journal of Bioethics: Volume 12 Issue 10 - Oct 2012
Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants’ Relatives Ben Chan
American Journal of Bioethics: Volume 7 Issue 4 - Apr 2007
The Study of Socioethical Issues in Systems Biology Maureen A. O'Malley
News (8)
May 2, 2013 4:13 pm
Cancers Share Gene Patterns, Studies Affirm
Scientists have discovered that the most dangerous cancer of the uterine lining closely resembles the worst ovarian and breast cancers.
July 10, 2012 4:39 pm
Searching genomic data faster (MIT News)
In 2001, the Human Genome Project and Celera Genomics announced that after 10 years of work at a cost of some $400 million, they had completed a draft sequence of the human genome. Today, sequencing a human genome is something that a single researcher can do in a couple of weeks for less than $10,000.
June 20, 2012 3:42 pm
Boston Children's to Study Families' Preferences for Returning Results from Pediatric Sequencing Research (Genomeweb)
A study underway at Boston Children’s Hospital is investigating how the preferences of parents can inform a choice-driven and ethical system for returning secondary findings of genomic sequencing studies of young children. The project, led by Boston Children’s’ Ingrid Holm, is combining a series of cognitive interviews — to better understand subjects’ preferences and decision making in choosing what results to receive from their children’s sequencing data—with a study tracking the experiences of families who actually go through the process of receiving results.
June 19, 2012 11:55 am
Patient Privacy or Scientific Advances: Do They Have to Be Mutually Exclusive? (Genetic Engineering & Biotechnology News)
Three months after examining issues associated with researchers using data from whole-genome sequencing, the Presidential Commission for the Study of Bioethical Issues turned its attention to the other side of the balance it is striving to strike, by discussing issues associated with protecting the privacy of the individuals whose genomes are under study.
June 4, 2012 11:44 am
Living proof of the value of personalized medicine (Sarasota Herald Tribune)
Human genome sequencing is already helping researchers find new treatments for illness. Now an unusual case study suggests that the benefits of sequencing may be enhanced in combination with detailed blood tests. he case involves Michael Snyder, a geneticist who was both the lead author and the subject of a study on genomics reported in the journal Cell.
May 20, 2012 1:16 pm
Many Rare Mutations May Underpin Diseases (New York Times)
The task of finding the genetic roots of common disease seems much harder, dimming the promise of personal genomics and the chances of quick medical payoffs from the human genome project, given new data about the human genome in two reports published online in the journal Science on Thursday. It now appears that large numbers of very rare genetic mutations may underlie common human diseases like schizophrenia and cancer. But because the mutations are so rare, costly studies involving large numbers of patients would be needed to identify their role in each disease.
May 16, 2012 10:00 am
What Happens When One Man’s Genome Is Revealed (Wall Street Journal)
Dr. Michael Snyder, chairman of the department of genetics at Stanford University School of Medicine, learned firsthand how gene sequencing can change a person’s daily life. Snyder, who is 56, two years ago decided to see what genetics might tell him about his own health. He’s not alone, as the cost of mapping a person’s full genetic profile has been dropping quickly, as WSJ reports, raising questions about how best to use the information. Colleagues sequenced Snyder’s whole genome, which revealed a number of potential health issues.
March 28, 2012 6:01 pm
Panel Seeks Input on Ethical, Privacy Issues in Genomics Research (iHealthBeat)
On Tuesday, the Presidential Commission for the Study of Bioethical Issues published a notice in the Federal Register seeking public feedback on the ethical issues involved in the large-scale collection of genome data.