Navigation Links
People want to be asked before sharing genetic data
Date:8/31/2010

ociate at Group Health Research Institute. "This indicates that even if most of a study's participants would agree to data sharing, it's still crucial to ask them."

Since 2008, the National Institutes of Health (NIH) has strongly encouraged many studies to submit genetic information to the federal database of Genotypes and Phenotypes (dbGaP). The reason is that genomic research on large numbers of people can yield insights that aren't possible with smaller numbers.

For new studies that will enroll participants prospectively, informed consent canand shouldaddress such sharing. But sharing genetic data raises ethical questions for longitudinal cohort studies, including ACT, which started long before dbGaP was established in 2006. Few existing informed consents address data sharing through this new mechanism. Ideally, Dr. Ludman suggested, research grants would include funding and time to pursue reconsent. In this study, it cost around $50 for each participant who was asked.

"Trust is a two-way street, and human research requires lots of trust," Dr. Ludman said. "People have an understandable feeling of ownership over their bodies and medical records, including their genetic information," she added. "Researchers show we're worthy of trust when we ask research participants for permission to use their information in a way that they haven't already agreed to."

Recent high-profile legal cases have highlighted the issue of consent and trust in research, including the Havasupai tribe vs. Arizona State University and parents vs. the Texas health department over storing newborn blood samples without parental consent. So too has the bestselling book, The Immortal Life of Henrietta Lacks, about the history surrounding the HeLa cell line, the world's most widely grown human cells.


'/>"/>

Contact: Rebecca Hughes
hughes.r@ghc.org
206-287-2055
Group Health Research Institute
Source:Eurekalert  

Page: 1 2

Related biology news :

1. Genetic differences that make some people susceptible to meningitis revealed in major new study
2. Ancient DNA identifies donkey ancestors, people who domesticated them
3. Brain atrophy responsible for depression in people battling multiple sclerosis
4. Beverages leave geographic signatures that can track peoples movements
5. Ocean changes may have dire impact on people
6. Autism genome project identifies genetic variants that may make people susceptible to disorder
7. Key nutrient in maternal diet promises dramatic improvements for people with Down syndrome
8. MSU researchers testing vaccine to help people quit smoking
9. Nomad people baffle with good health in spite of malnourishment
10. Young people with inflammatory bowel diseases are at increased risk of fracture
11. Reward-driven people win more, even when no reward at stake
Post Your Comments:
*Name:
*Comment:
*Email:
Related Image:
People want to be asked before sharing genetic data
(Date:12/17/2014)... Research and Markets ( http://www.researchandmarkets.com/research/s6qzt5/samsung_galaxy_s5 ) has ... - Home Button Synaptics Fingerprint Sensor Technology Analysis" ... http://photos.prnewswire.com/prnh/20130307/600769 Based on a totally different ... the first time a fingerprint sensor in its product. ...
(Date:12/17/2014)... Markets ( http://www.researchandmarkets.com/research/9zq33j/global_chemical ) has announced the ... report to their offering. ... in this market is the increasing demand for medical ... of patient data for quick and correct diagnosis during ...
(Date:12/11/2014)... , Dec. 09, 2014 Research and Markets ... ( http://www.researchandmarkets.com/research/9ql3kr/biometrics_market ) has announced the addition of ... to their offering. One major trend ... biometric systems. Multimodal biometric systems utilize more than one ...
Breaking Biology News(10 mins):Samsung Galaxy S5 - Home Button Synaptics Fingerprint Sensor Technology Analysis 2Global Chemical Sensor Market 2015-2019: Key Vendors are Abbott Laboratories, Bayer, Hoffmann La-Roche, Johnson & Johnson, NGK Spark Plugs and Robert Bosch 2Biometrics Market in India 2015-2019: Key Vendors are 3M Cogent, NEC, Safran and Suprema 2
... release is available in <A HREF=",http://chinese.eurekalert.org/zh/emb_releases/2010-05/niom-rfl051310.php,">Chinese . ... helps to explain resilience to stress, vulnerability to ... in the reward circuit of mouse and human ... compounds that boost the action of a key ...
... precise understanding of cellular growth and movement is the ... disorders caused by dysfunctional cell behavior. Recent breakthroughs in ... proteins are turned ,on, or ,off, at the molecular ... protein signaling influences cell behavior. A technique developed ...
... WHAT: The World Science Festival launches its first full ... This event will feature a keynote address by Harold Varmus, ... Technology, as well as a live simulcast of the announcement ... Letters from Oslo, Norway. A panel discussion follows, moderated ...
Cached Biology News:Resilience factor low in depression, protects mice from stress 2Resilience factor low in depression, protects mice from stress 3Control of cell movement with light accomplished in living organisms 2
(Date:1/22/2015)... MA (PRWEB) January 22, 2015 zFlo ... is pleased to announce an exciting product from a new ... motion analysis solutions over the past 15 years, with offerings ... Most recently, their 3D IMU system (inertial measurement unit), iSen, ...
(Date:1/22/2015)... 22, 2015 Diagenode, Inc., a ... the Bioruptor® and complete solutions for epigenetics research, ... immunoprecipitation, alleviating the need for manual processing. The ... for ChIP of histones or transcription factors and ...
(Date:1/22/2015)... , a precision medicine software company that has developed a ... genomic, imaging and other biomedical data in research and clinical ... CEO of Aspera, an IBM Company, to its board as ... "We are pleased to welcome Michelle to ...
(Date:12/24/2014)... YORK , Dec. 24, 2014 PlasmaTech Biopharmaceuticals, Inc. ... critical areas, announced the closing of an underwritten public offering ... up to an aggregate 3,500,000 shares of common stock, at ... warrant.  The warrants have a per share exercise price of ...
Breaking Biology Technology:3D Motion Capture Just Got Easy 2Diagenode Launches Unique Semi-Automated Solution for Chromatin Immunoprecipitation 2GenoSpace Expands Board with Appointment of Michelle Munson 2PlasmaTech Biopharmaceuticals, Inc. Announces Closing of Public Offering 2PlasmaTech Biopharmaceuticals, Inc. Announces Closing of Public Offering 3
... Call to be held on November 14, 2007 ... 8:00 a.m. (Eastern) / 9:00 p.m. (Beijing/Hong Kong), ... Inc.,(Nasdaq: SSRX ), a leading China based ... biopharmaceutical,products, today announced that it will release unaudited ...
... October 31 Amarin Corporation plc,(NASDAQ: AMRN ) ... Executive Officer of Amarin, will present at the Acumen,BioFin ... 6 at 12 noon Eastern time. The conference will ... Palace Hotel, New York. The presentation will be ...
... Inc. (Nasdaq: EMIS ) today announced ... New York to Cedar Knolls, New,Jersey. Emisphere ... in Tarrytown. Emisphere Technologies, Inc. is a,biopharmaceutical ... improved delivery of,therapeutic molecules and pharmaceutical compounds ...
Cached Biology Technology:3SBio Inc. Schedules 2007 Third Quarter Earnings Release On Tuesday, November 13, 2007 2Amarin Corporation to Present at Acumen BioFin Rodman & Renshaw Ninth Annual Healthcare Conference 2Amarin Corporation to Present at Acumen BioFin Rodman & Renshaw Ninth Annual Healthcare Conference 3Emisphere Technologies, Inc. Moves Into New Corporate Headquarters 2Emisphere Technologies, Inc. Moves Into New Corporate Headquarters 3
...
...
... Experion software, PC, is used ... the data obtained from the Experion ... data in electropherogram and simulated gel ... other calculations in a Results table. ...
... for use in the Microsart e.motion are sterile-sealed, ... in a specially designed individual package on a ... band of membrane filter units ensures that they ... the sealed band guarantees uniform dispensing of the ...
Biology Products: