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:6/24/2015)... , June 24, 2015 Biometry ... with emerging biometric password solution one face in. ... one face in, entering the ... ground-breaking and affordable multifactor-authentication biometric answer to the ... technology, provided in partnership with KeyLemon, one face ...
(Date:6/18/2015)... NEW YORK , June 18, 2015 ... in US$ Million by the following Product Segments, which ... Immunoassay Systems, Chemiluminescence Immunoassay Systems, Radio Immunoassay Systems, and ... for the US, Canada , ... Asia-Pacific , Latin America ...
(Date:6/17/2015)... Fla. , June 17, 2015  Crossmatch™, ... today announced that its U.are.U ® 4500 ... Togo,s Eateries, Inc., a ... sandwich chain, to increase security, improve accountability and ... readers enable instant, non-repudiable identity confirmation for employee ...
Breaking Biology News(10 mins):KeyLemon Announces Partnership With Biometric Password Solution onefacein 2Global Immunoassay Systems Market 2Global Immunoassay Systems Market 3Global Immunoassay Systems Market 4Global Immunoassay Systems Market 5Global Immunoassay Systems Market 6Global Immunoassay Systems Market 7Global Immunoassay Systems Market 8Global Immunoassay Systems Market 9Global Immunoassay Systems Market 10Global Immunoassay Systems Market 11Global Immunoassay Systems Market 12Global Immunoassay Systems Market 13Global Immunoassay Systems Market 14Global Immunoassay Systems Market 15Global Immunoassay Systems Market 16Global Immunoassay Systems Market 17Global Immunoassay Systems Market 18Global Immunoassay Systems Market 19Global Immunoassay Systems Market 20Global Immunoassay Systems Market 21Global Immunoassay Systems Market 22Global Immunoassay Systems Market 23Global Immunoassay Systems Market 24Global Immunoassay Systems Market 25Global Immunoassay Systems Market 26Global Immunoassay Systems Market 27Global Immunoassay Systems Market 28Global Immunoassay Systems Market 29Togo's Eateries Improve Security and Accountability with Crossmatch Fingerprint Readers 2Togo's Eateries Improve Security and Accountability with Crossmatch Fingerprint Readers 3
... New research shows that following a vegetarian diet and ... risk of diabetes in African Americans, who are twice as ... whites. "These findings are encouraging for preventing ... susceptible to the disease than other populations," said Serena Tonstad, ...
... York, November 3, 2011 Impulsive individuals tend ... drug and alcohol abuse, to problem gambling and difficult ... social situations. Impulsivity is also a common feature of ... shows that people may react this way, in part, ...
... which people use before progressing to the use of ... this progression is called the "gateway sequence" of drug ... by Amir Levine, MD, Denise Kandel, PhD; Eric Kandel, ... the first molecular explanation for the gateway sequence. They ...
Cached Biology News:Vegetarian diet, physical activity protect against diabetes in black population, study shows 2Impulsive versus controlled men: Disinhibited brains and disinhibited behavior 2Nicotine primes brain for cocaine use: Molecular basis of gateway sequence of drug use 2
(Date:6/30/2015)... , ... June 30, 2015 , ... ... 12 to take part in the first half of “Integrative Biotechnology,” an applied ... partnership established in summer 2014, this course combines students from both universities and ...
(Date:6/30/2015)... June 30, 2015  NASA astronaut Kjell Lindgren , ... on his first mission to the International Space Station ... to 9 a.m. EDT Tuesday, July 7. Lindgren ... City, Russia . The interviews will be ... highlighting his mission training. To schedule an interview, ...
(Date:6/30/2015)... ... June 30, 2015 , ... uBiome ... new insights on mechanics of fecal microbiota transplantation in C. difficile patients. , ... microbiome of patients undergoing fecal microbiota transplantation (FMT) as a treatment for Clostridium ...
(Date:6/30/2015)... ... 30, 2015 , ... The maximum number of shares proposed to be purchased ... shares of unvested restricted stock). On June 29, 2015, the last trading day prior ... reported on the OTCBB was $2.29 per share. , The tender offer will expire ...
Breaking Biology Technology:Rivier University and Beijing City University Academic and Cultural Exchanges Begin 2NASA Astronaut Preps for First Space Station Mission, Available for Media Interviews 2uBiome and OpenBiome Partner for Microbiome Study in FMT Patients 2uBiome and OpenBiome Partner for Microbiome Study in FMT Patients 3Cryo-Cell Commences Tender Offer to Purchase its Common Stock, Up to 750,000 Shares at $3.25 per Share 2Cryo-Cell Commences Tender Offer to Purchase its Common Stock, Up to 750,000 Shares at $3.25 per Share 3
... ... ,For Excellence In The International Marketplace. , ... (PRWEB) March 24, 2010 -- Sterlitech Corporation, one of the ... acceptance of the prestigious Faces of Trade® Award presented by the US Chamber of ...
... , ... , ... ... NEW YORK , March 23 The Michael J. Fox Foundation announced that monoclonal ...
... Qteros, Inc., and the University of Massachusetts Amherst announced today that the ... Producing Biofuels and Related Materials" describing the novel creation of products, including biofuels, through the fermentation ... ... ...
Cached Biology Technology:US Chamber Of Commerce Honors Sterlitech Corporation 2Michael J. Fox Foundation Offers High-Quality LRRK2 Antibodies for PD Therapeutic Development 2Michael J. Fox Foundation Offers High-Quality LRRK2 Antibodies for PD Therapeutic Development 3Michael J. Fox Foundation Offers High-Quality LRRK2 Antibodies for PD Therapeutic Development 4Qteros and UMass Amherst Announce the Issuance of a U.S. Patent for Production of Ethanol From a Unique Microorganism, the Q Microbe(TM) 2Qteros and UMass Amherst Announce the Issuance of a U.S. Patent for Production of Ethanol From a Unique Microorganism, the Q Microbe(TM) 3Qteros and UMass Amherst Announce the Issuance of a U.S. Patent for Production of Ethanol From a Unique Microorganism, the Q Microbe(TM) 4Qteros and UMass Amherst Announce the Issuance of a U.S. Patent for Production of Ethanol From a Unique Microorganism, the Q Microbe(TM) 5Qteros and UMass Amherst Announce the Issuance of a U.S. Patent for Production of Ethanol From a Unique Microorganism, the Q Microbe(TM) 6